What people are “supposed to” be doing.


Well I may have been silly to sign up for NaBloPoMo, but I did. It’s this thing where you write a post every day in the month of November. The trouble is, I don’t want to bore people with vacuous posts made only to fill a quota.

But, fortunately for me, I found an old draft sitting around in my massive amounts of drafts of posts that I’ve never posted before, and it seems to have substance to it:

It’s finally all decided to make sense, one part of what’s bothered me for a long time in portrayals of living as a relative to a disabled person.

It’s summed up in statements like, “I didn’t get to be a kid because of my brother,” or “I can’t do the things I’m supposed to be doing as a young adult because I have to worry about my sister.”

I even had someone (if that person reads this, it’s not a big deal anymore, just an example) tell me that what people were supposed to be doing at her age (which was also my age) basically involved… something like finding oneself, hanging out with friends, not really worrying about a lot, and certainly didn’t involve taking care of someone like me.

For every stage of life, it seems there’s something people are “supposed” to be doing that doesn’t happen to involve the inconvenience of a disabled person plonked into the middle of it. If you take this to its logical conclusion, disabled people are not “supposed” to exist at all, because obviously our main function is to interfere with what non-disabled people (or, at times, people who are disabled in a different way) are “supposed to” be doing.

This kind of talk puts us firmly outside of basic human experiences, when it’s actually clear that disability is a basic human experience, in fact one of the most universal if you take this across the lifespan. But this notion that nobody is supposed to have to deal with anything as inconvenient as our existence (in a social world that has been designed purely for the convenience of other kinds of people) kind of absolves everyone else’s responsibility for dealing with us at all. It, in fact, makes things like disability-based segregation make total sense: After all, we wouldn’t want disabled people inconveniencing everyone else.

Of course, this is not as simple as just disabled and non-disabled. Some kinds of disabled people can say that maybe they don’t need to be forced out of various places, but some people do. Just imagine I’m including that sort of scenario in the rest of what I’m saying, though, because I’m having a hard enough time with language at the moment as it is without covering every contingency.

What we have, is a situation where non-disabled people have a fantasy about a “regular life,” which doesn’t really include things like disability, or anything else “inconvenient” to that life. Instead of being a part of that life, disabled people are automatically intruders upon that life, inconveniences. Burdens. There is a set of things people are “supposed to” be doing, and relating to disabled people is not one of them. Just not on the list of “supposed to”. So, we supposedly deprive everyone else of their rightful developmental stages, from childhood to adulthood all the way into retirement. Because someone came up with a biased set of developmental stages that somehow doesn’t include us or, I suspect, a lot of other people. People don’t get to “be a child,” “be a teenager,” “be a young adult,” “be a mature adult,” “enjoy their retirement,” around us. We take that away from them… supposedly.

Now from my perspective, this gets interesting. Because, well, I’m in this worldview the barrier. I’m the person who supposedly gets in other people’s ways. Somehow, the impact of me on their worlds is supposed to be earth-shattering. Yet, at the same time, I’m facing a world that is not designed for me, has zero place for me, half the time denies that people like me even exist or count as human, is as liable as not to permanently segregate people like me in institutions so that we’re not trouble to other people — is in fact so much not designed for me that every time I interact with it it finds novel ways of shutting me out. Everywhere. And I am not supposed to say anything at all about this. I am, in fact, supposed to shut up and quit being inconvenient. They see someone like me as one single barrier to their living appropriate lives, yet somehow the multitude of barriers I face, including possibly barriers to survival, because of their definition of appropriate, means nothing.

Meanwhile, I am working hard all the time just to keep up with an environment that is designed with only certain kinds of people in mind.

The amount of work I do, in fact, would probably be unthinkable to a lot of the people who imagine people like me to be lazy. (This is also true of poor people and probably a lot of other people besides disabled people, all of whom get scapegoated as lazy.) I am constantly adapting and pushing myself to and past my limits trying to keep up. (To anyone curious, my limits look like everything going totally blank and all conscious thought and movement stopping. They’re not the sort of thing that a little effort gets you past, in fact hitting them is usually a sign of too much effort, and hitting them occurs regularly.)

Disabled people have been part of families since families existed, and there’s plenty of evidence of families assisting disabled people since prehistoric times. While the idea of disabled people as burdens who give nothing in return is an old one, the idea of life in general as something that’s supposed to be easy and follow a particular developmental plan seems like a relatively new one.

I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world. I don’t know how many stories I have heard of teenagers raising their younger siblings themselves after the parents died, but these and other stories of young people forced into situations that modern middle-class American society considers “adult” are also probably more the rule than the exception.

But these days, we’re told it’s supposed to be different. Children who provide a lot of assistance to their parents or siblings, for any reason, are urged to believe they’re missing out on a proper childhood — proper childhood is apparently not supposed to involve any real work at all except for “chores” around the house. And if kids are doing the chores because the parents are unable to do them, then even if it’s the exact same chores they would’ve otherwise been assigned, that’s still supposedly wrong. I’ve been told I “missed adolescence” because of where I spent most of it, but in reality that period of life is only a period of total irresponsible abandon between childhood and adulthood, in times and places where people can afford for it to be so. I couldn’t.

Now I want to take a look at my actual family. (The following labels are ones that they themselves agree to. I’m not going to put everything in quotation marks, it’s just too confusing that way. So consider any of my usual criticisms of psychiatric labeling and such implicit in all this.) My father and one of my brothers have AS. My mother is bipolar. And I’m autistic.

I know how I am supposed to feel about this — according to various bits of popular psychology — by how I see people all over the place portraying it. I am supposed to feel cheated out of a proper childhood by growing up with a mother with what’s considered a severe mental illness, and I’m also supposed to be traumatized by it and very much wish that she would take medication (and possibly involve myself in NAMI and try to force her to take medication, and commiserate with all the other NAMI members when she won’t). I’m also supposed to feel unloved by my father, and like he totally lacks any empathy, and is in most ways defective as a parent as well. Meanwhile, I think I’m supposed to view my brother as a burden and an embarrassment and wish I had a normal brother in his place. In fact, forget just him, I’m supposed to feel that way about my entire family.

Needless to say, I don’t feel any of those ways about any of my family. They are just the ways that I am told I should feel, and other people are told they should feel. And of course, if someone already feels that way, their feelings should be “validated” as “natural under the circumstances,” and then they should go around reassuring other relatives that their feelings are natural too. And, of course, we should all go around telling anyone who doesn’t feel this way that clearly they didn’t live through the hell we did. Or something. Never mind that feelings, as usual, are the results of not just a situation but of our preconceptions about the situation, and that a lot of those feelings stem from some pretty bad preconceptions.

I did not grow up expecting that I was supposed to have only a certain kind of family, instead of the one I had. I grew up, in fact, considering myself pretty lucky, compared to among other things the relatives who really did have to do things like raise all their siblings from an early age, because their parents either died or were too busy to do it all themselves. I also knew that we had it a lot easier growing up than our parents did.

Aside from that, it never occurred to me to divide my family up between which members could be by some standards considered disabled and which couldn’t. Sure, great-grandma used a wheelchair, and her son was her live-in assistant, but that’s what family does. Yeah, my parents told me my brother was brain-damaged at birth, but he was just my brother. My parents’ idiosyncrasies did not seem all that weird to me because they were my parents, that’s just who they were. I grew up hearing stories of my eccentric and way-more-than-just-eccentric relatives and thought this was normal.

And it was. It never once occurred to me to blame the things I didn’t like about any particular relative (and there are things not to like in anyone, but I encountered things like molestation from a few relatives that are really things not to like, and those relatives did have assorted labels that I somehow never blamed this on) on a disability, or to divide them up into their “good” (non-disabled) parts and their “bad” (disabled) parts. I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. (They always assume I’ve never experienced these things. I have. I think differently about them, and hence feel differently about them, than people who believe that there’s a particular ideal that everyone should have lived.) Sure I’ve griped about some of the really screwy events in my family but not in the “poor me I had to have disabled relatives and was cheated by it” sense.

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general. That anything less than that is having something stolen from them, and a perfect excuse to feel sorry for themselves (and have this self-pity praised by therapists and sibling support groups and NAMI and the like).

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.


About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

30 responses »

  1. There is also the other side of the coin. We don’t follow the normal template of find significant other and gainful career/create family/acquire sufficient monetary wealth and raise ideal offspring/retire to a lifestyle of world travel and interesting hobby or second career/age, sicken and die with appropriate concern from descendants now on their way to acquiring sufficient monetary wealth and raise ideal offspring.

    Of course, no one in real life actually fulfills that model. But we do fail to fulfill it more obviously than most folks, and that challenges a good deal of societal norms. Plus many people just can’t comprehend a lifestyle that is not centered on the pursuit of those goals. “Why didn’t you ever get married?” “What? You don’t have a girlfriend?” “You’re so good with kids! You should have your own.”
    The fact that I am not really interested in romantic relationships–that I don’t feel any great need to procreate, and in fact I don’t particularly want the responsibilities of parenthood–that I’ve never gotten close enough to anyone to make an intimate relationship a possibility, and that’s because I prefer not to get close to people–just doesn’t compute in most people’s heads. It’s just too great a deviance from the perceived norm to be integrated into their worldview.

  2. I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.

    I agree. “Adolescence” as a label is a pretty recent development; for a long time, people didn’t really conceive of a phase between “childhood” and “adulthood.” And I’m pretty sure that anyone’s fantasy of the “perfect” life they’d have if only some problem or other would go away is just that–a fantasy. (I don’t think it’s unique to disabled people and their relatives, even).

    I hear about a lot of disabled people (and their parents) who feel jealous of or inferior to their (non-disabled and usually younger) siblings, because the non-disabled siblings can do some things they can’t.

    Although I don’t have any biological siblings, I do have a lot of cousins who I spent a lot of time with, and knew lots of kids at school. So I was very familiar with people my age who could do things I couldn’t. I never felt inferior to them. I felt very lucky to be living in a world full of geniuses ;-).

    A major reason I felt that way was because of the culture around me: we were encouraged to help each other, bullying wasn’t tolerated, etc., etc. So I don’t buy the idea that it’s perfectly normal to feel that your disabled sibling, child, whoever has ruined your life. “Validating” these feelings only encourages them.

  3. Brava, Amanda. In a related construction, folks will say “I want my life back”–um, this isn’t an interruption; this IS your life, still in progress. (And it might be a really good life, if you give it a chance.)

  4. When you find out that your child is “disabled”, there is this assumption that your goals are forever changed. I went through this briefly before I got a grasp of what ASD really is. The truth is my life is pretty much just as dramatic and stressful as it was before my son’s dx and before his developmental delays surfaced and even before he was born.
    I remember when I was pregnant, my husband and I wished for a child “just like us”. We definitely didn’t want a “normal” child, ie football QB (son) Miss Priss (daughter) with shallow personality traits. “Just like us” is certainly what we have.
    This fellow parent (who is a curebie) was describing a situation at a Starbucks. She was listening to this woman stressing out on some NT thing, about her kid who was some overachieving something. And she started to cry because she wished she could be that mom. She recalled all the things her son couldn’t do and how her life was so awful. It’s like, I’d be crying too if I compared myself to some cellphone-wearing overachiever, carting my kids off to their day programs, not raising them myself.
    You’re right, it’s the mythologizing that society gets wrapped up in.

  5. When my brother, who has Down syndrome, was born, everyone expected me to feel variously: jealousy (that he got all the attention, which he didn’t), pity (for my mother, to quote my grandmother, for having to raise “a child like that”), sadness (that he wasn’t the sibling I’d “hoped” for), and many other things that the “So Your Child has _____” (fill in a disability) books told my parents to expect me to feel.

    In college, when I discovered the Internet, I signed up for a couple of sibling lists and found myself very out of place because…

    …well, because I *wasn’t* traumatized, scarred, jealous, or otherwise upset that Patrick has DS. He’s Patrick. He’s my brother and I love him. I couldn’t imagine my life without him — exactly as he is.

    Your comment, Amanda, that “this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical,” I think, has a lot to do with our very image-conscious culture.

    I was once talking to my dad about politics (always a bad idea, and I should have known better). He made a wistful comment that he wished he lived in the 50s, because he envied the Leave It To Beaver image that everyone projected.

    My response was: “Well, then you wouldn’t have a son — or he’d at least have been in an institution.”

    I didn’t get much of a response, but what I understand now is that our whole culture is obsessed with image, whether it’s the image of the perfect family, the perfect body, the perfect house, etc. etc.

    The effect, I think, is that a whole lot of people are unhappy or unsatisfied, for various reasons, whether it be that they perceive that their childhood/adolescence “lost” something because of a sibling with a disability, that they must drive a used car, or that they aren’t a size zero.

  6. I experienced this from another perspective. I got sick at fifteen and particularly through my late teens, I had a very conscious idea of what I was supposed to be doing but failing to do.

    And honestly it was the greatest liberation, if a very painful one. But to be twenty-five and to know that there are so very many ways of going about this life is a great gift that you and I share.

    It is also a gift we can give to those around us by demonstration – if that doesn’t sound too sappy. We’re not brave, we’re not special; we are simply aware of other possibilities.

  7. Yeah. That awareness of other possibilities thing… that becomes of the biggest clashes I encounter between me and people with a totally different worldview that hinges on doing Thing X at Time Y in Way Z in order to be a real person and cannot imagine why anyone would be happy or think of themselves as productive or contributing (or even in some cases, think of themselves as real adults) in any other situation, timeline, role, etc.

  8. Thank you so much for writing this.

    When my son Patrick (age4) was diagnosed with ASD almost everyone told us about groups for his older brother Matthew (age6). It was suggested we get him counselling. Everyone was worried about him and how he’d react. How this would change his life.

    But here’s the thing. Matthew loves being Patrick’s older brother. He isn’t jealous. He isn’t angry. If anything, loving Patrick, playing with him, having him as part of his life, has made Matthew grow in ways that I am proud of. When an adult asks him about his brother or a playmate suggests Patrick is being bad Matthew will say something like this. “Patrick’s brain is a bit different than mine and sometimes we have to help him learn the rules but I love him and he’s a great brother.” Out of the mouth of babes! And if only all of us could love and accept so unconditionally.

  9. You’re quite right… the modern idea of a perfect childhood is so far removed from historical reality, it’s not even funny. Until recently, the idea of childhood as we know it didn’t even exist. Children were sent out to work in the fields as soon as they were old enough to toddle along the rows. In some languages, the word for “child” has the same root as the word for “slave,” and that’s just about how children were treated. Families often sold their kids to buy food to get through the winter, if they had a bad harvest.

  10. I was also sexually abused by a relative at a young age (nothing particularly movie-of-the-week-worthy, but inappropriate nonetheless). And while I know this was a very bad thing, it did not set the entire course of my life, and I am very reluctant to bring it up with therapists and the like — I’ve found that they tend to typecast me as an “abuse victim” and completely ignore other aspects of who I am.

    This was actually one of the biggest problems I had while growing up; since the abuse was uncovered when I was a child in single-digit ages, a huge deal was made of it, and I was constantly fed all this stuff about how I was supposed to be reacting and feeling. It got to the point where if anyone asked me why I was doing something they perceived to be bad, I would say, “Because I was molested”. I didn’t have the words for why I was really doing things and my response in these cases was fundamentally an echolalic script. Though the abuser is at fault for perpetuating the abuse in the first place, I don’t think those reacting to it (particularly the “professionals”) necessarily knew how to deal with it in the best possible way, since the net result was that I felt like my personality had been condensed and reduced to that of “scarred victim” rather than “complex individual who happens to have had some bad experiences”.

  11. In defense of those adults, I would say that you experienced a backlash. Because in the past, sex abuse was covered up, lied about, the victim may be told it was their fault or imagination. And that would manifest in terrible emotional trauma. I know people that deal with that and it did affect every aspect of their experience.

  12. My problem with sexual abuse has been that people try to put it into a particular category, that’s worse than other kinds of abuse.

    When I think back on times I’ve been sexually abused (by relatives and non-relatives), it’s not good, at all, but it pales in comparison to, say, the everyday hell of institutionalization.

    But everyone wants to focus on the sex like that’s the worst part.

    Like, a person can be utterly dehumanized, treated like something worse than crap, and somehow it’s the sex that’s bad about it.

    Someone once asked me, when I was talking about institutions, if I was ever sexually abused in them. When I said yes, he became a lot graver, as if that made them more awful. Yeah, having someone sexually abuse you is awful, but there are worse things in the world and certainly in institutions.

    It’s almost as if sex becomes a special category, and I don’t get that.

  13. I don’t get the “sex as a special category” thing, either. The person who abused me also did other things (things much worse, to me, than the sexual abuse — like things that made me fear for my life). But the sexual stuff was what everyone wanted to focus on, and that always weirded me out, even as a kid. There was also this thing where people acted like I had to talk about it constantly, and that not wanting to talk about it was a sign that I was repressing something.

    And yes, a lot of people do experience terrible trauma later on due to having to hide things like the fact that they were sexually abused, but I think it needs to be brought out into the open that there are other kinds of abuse. If every form of dehumanizing abuse got the same kind of immediate “this is something serious!” realization as sexual abuse does, that might be a step in the right direction.

  14. This is an excellent and thought-provoking post. I had a friend who used to say, “Normal is just a setting on a dryer.” In other words, it’s a term appropriate for machines, but with very little relevance to real life and real people.

  15. Hello.
    And with perfect timing, here is an excerpt from an article in Australia’s “Daily Telegraph”, from their London correspondents:
    College Urges Euthanasia For Sickest Newborns

    Britains’s Royal College of Obstetricians and Gynaecology is reportedly calling on doctors to consider euthanasing “the sickest of newborns” which it says can disable healthy families.

    The Sunday Times newspaper said today the proposal was in reaction to the number of such children who were surviving because of medical advances.

    The college argued “active euthanasia” should be considered for the good of families, to spare parents the emotional burden and financial hardship of bringing up the sickest babies.

    The proposal is contained in the college’s submission to an inquiry into ethical issues raised by the policy of prolonging life in newborn babies.

    Euthanasia of newborns is illegal in Britain.

    “A very disabled child can mean a disabled family,” the submission says.

    Now disabled children are being said to actually “disable” “healthy” families. I find that appalling. Personally, I would consider a family to be healthy if it could accept, love, and care for ALL of its members, regardless of thier health. Any family that is “disabled” by the birth of a handicapped child probably wasn’t very healthy to begin with, or at least not very strong.

  16. On the sexual abuse, I think part of the reason it gets such a strong reaction is that it’s so easy to understand. Dehumanization isn’t something most people can grasp easily. For someone who’s never had experience in institutions, or forced drugging, or the kind of psychiatric treatment you described, it takes time and effort to understand what’s so abusive, and how bad and damaging it can be. And even with the physical abuse, people have to choose to believe your statements that it was abuse, over the claims of professionals that it was necessary treatment.

    With sexual abuse, there’s no such problem. People who have never experienced it can summon immediate mental images of what the words ‘sexual abuse’ mean, and how it’s wrong and damaging. There’s no credible professional claim that molesting someone will treat or cure them, or keep them from harming themself. So when people hear that you were sexually abused, it provides a simple, readily understood example of something they can agree is wrong. That may be why people latch onto that so much.

  17. I also think that part of it is our society’s sick obsession with sex in general. It’s something that most adolescents/adults, who mostly define our culture, are interested in, but at the same time there’s still the view that sex is “bad” and it’s supposed to be especially bad for a child to be sexually abused because they can experience physical pleasure along with emotional distress.
    In reality, I think it just has a different effect. Sexual abuse has the potential to cause more relationship problems such as simultaneously wanting and being terrified of sex, and more often results in hating your body and such than some other kinds of abuse (though emotional abuse directed at the person’s appearance or physical abilities has that effect, such as what fat people and some disabled people experience).
    But relationship problems in general are common when a child is abused, especially by their parents, because children are still learning how society works (more so than adults). Very young NTs also expect their parents to protect them from any harm, so even non-abusive trauma, such as a natural disaster, can make them have trouble trusting people. (Although I’m autistic, I certainly had the ‘parents as invincible protectors’ view when I was young, and assumed they knew about the abuse but didn’t care enough about me to stop it. The fact that parents don’t know everything that happens to their children only occurred to me when I was older.)
    One thing is that a neurologically atypical person might be affected differently by abuse than NTs. For example, since many autistics are asexual, it may be that sexual abuse is more like physical abuse in its effect, because they don’t experience physical pleasure from it and therefor it’s not confusing good/bad but just plain bad, like a beating is.

  18. In reference to California Girl’s comment-I am also appalled at active euthanasia of infants. However, I saw a woman on TV recently talking about the life of her sick toddler who had just died. She said that every effort was made to save her baby’s life and at the time she was grateful, but looking back she said her child lived about 18 months, never went home and suffered numerous surgeries and on-going pain. Her opinion was that her child’s life was so short and was horrible and all she experienced was suffering. She wished she had allowed her child to die naturally and said she would never inflict such suffering on another baby. Her point of view had gone from her own desire, keeping the child alive, to the child’s, a life of suffering and trauma with no reprieve. Where do we draw the line?

  19. That is a woman over-interpreting her child’s life though. I don’t think a person can ever decide for another person, certainly a person so young, that that other person’s pain is so great that death would be better. Even if a person cares deeply about another person. The lived experience of someone who has always been in pain, is vastly different from the lived experience of an adult looking on that person in pity. Pain is awful, yes, but there’s so much else to life, and other people can’t always see that.

    If someone had known that the first twentyish years of my life would be spent in one of the worst kinds of pain known of, they might perceive my life as merely pain, pain, and ongoing pain, and therefore not worth living or prolonging. (I have already had people try to passively “allow me to die” and I have to say from the receiving end it feels no different from being “actively” killed.) But there is so much more to life than pain, even in someone’s life who has intractable, awful pain. (And “intractible” often says more about the skill of the doctors treating the pain than about the pain itself, anyway.)

    I know a lot of people who have chronic, severe pain, and have had multiple surgeries in childhood, and spent a lot of time in the hospital, and so forth, and few of them regret being alive. They might not want the pain, but there’s so much more to life than that.

    It’s like I said in my post “the richness of life,” that is something that can be found anywhere — in a short life, in a long life, in a life full of pain, etc. I don’t think it’s ever for us to judge, even in “compassion”, that someone else is better off dead.

  20. Corpsebride,

    There’s a case in England you might find interesting. Charlotte Wyatt was proclaimed, at birth, to be blind, deaf, completely unaware of her surroundings, and feeling nothing but constant pain. with all medical diagnoses indicating that she would continue in that condition until a premature death, the doctors sought legal permission for a do-not-resucitate order against the parent’s wishes. Fortunatly, the parents kept fighting the case in court. She is now three years old, plays with toys, eats solid food, and shows every sign of enjoying life. The sad thing is the emotional impact on the parents of spending two years fighting the court to keep their daughter alive is being held up as an example of how hard it is for families to raise severely disabled children.

    While I understand how one might be reluctant to allow suffering to go on with no apparent hope, only the person experiencing can say how much they suffer, or what they’re getting out of life. Doctors do attribute pain and suffering (a person can be in pain and not suffer) mistakenly sometimes, especially to babies and others who can’t communicate. And no one can know for sure in terms of hope.

    So any lines drawn, however well-intentioned, saying “people like this can just die,” are kind of scary. There’s the danger of the relatively obvious mistake, in which someone who would have lived or wasn’t suffering is killed for someone else’s assumptions. And there’s the nearly unnoticable mistake, where they have all of the problems and the diagnoses correct, but death just isn’t better.

  21. My son may never go to prom. I didn’t go to my prom either. My son may never marry. I am divorced and single for 4 years now. Julian is my heart and has taught me so much about the world and life. He is only four. I wouldn’t trade him for “normal” any day of the week. Everyone who has children should be blessed with a child like him. Yes, I have to put his shoes on thirty times a day. A lot of shampoo, juice, lotion, etc…gets squeezed out and painted with. I am not permitted to rearrange a certain shelf of knicknacks in our home. I do fear constantly that he will escape and decide to jump into a pond. I would die too, if that ever happened. But watching Jules watch the world is really something to see. I could watch him for hours. Also if one more person tells me “I don’t know how you do it; you must be a saint.” I will scream. Yes, Julian is busy and he definitely bears watching, but he never yells at me that he hates me. He can make a joke out of anything. And when he does speak, it’s because he has something to say.

  22. I know how I am supposed to feel about this — according to various bits of popular psychology — by how I see people all over the place portraying it. I am supposed to feel cheated out of a proper childhood by growing up with a mother with what’s considered a severe mental illness, and I’m also supposed to be traumatized by it and very much wish that she would take medication

    Trying to figure out how to put this into words…

    When we do things like telling people “just because your therapist decided you had X problem doesn’t necessarily mean you need to do what they say to get better,” the onlookers tend to rush in and tell us that we don’t understand how serious the situation actually is, etc, etc, this person ‘really has a severe illness,’ and a whole bunch of other things which indicate that they believe our entire knowledge of such things– not only of the system, but of ‘crazy’ behavior and experiences themselves– is merely abstract and idealized. For if we had ever had any first-hand, non-abstract experience with ‘people who are really sick,’ then we would surely see that the path advocated by NAMI was the correct one, with no question at all in our minds.

    The problem is that this isn’t true at all. Our mother, for one, has never received a psychiatric diagnosis, but has gone in and out of many phases of ‘odd’ beliefs without much basis in observable reality– believing, for instance, that other family members (people who totally boggled at the suggestion that they would even have a reason to do any of this) were stalking her, breaking into the house and rearranging her things, or tampering with her car so that it wouldn’t work properly. She has always insisted there was nothing wrong with her, that everyone else was the problem, and refused to go to a therapist or take medication. (Although, yeah, to us growing up that was just “mom’s at it again,” not reflective of any particular disorder.) And there’s another family member who threatened us many times, sometimes with weapons, and was considered by teachers and doctors to have bizarre and violent behavior. All of which would probably set us up to look like a perfect NAMI spokesdrone, superficially, someone who could give a pity-mongering speech about how our childhood was stolen from us and how our mother should have had forced treatment because she couldn’t understand that there was anything wrong with her, and how much better everything would have been if she took her meds.

    But wait! There are a LOT of snags here. One of them being that the family member with the ‘violent behavior’ WAS receiving ‘treatment,’ a lot of it, and kept getting worse and worse the more of it he got. We couldn’t claim “if someone had forced him to take his meds we wouldn’t have had to be afraid of him,” because he WAS being forced to take them, and it wasn’t helping him. Once he managed to cut most of his ties to the system and was able to start sorting things out on his own, things got better; not overnight, but enough that we have a good relationship these days, despite the past. I mean, we can’t pretend that it didn’t affect us, but we also don’t blame either him or some ‘illness’ for it, knowing what we do now.

    We’ve also known people who had, superficially, at some or most times, had more ‘outlandish beliefs’ or acted stereotypically ‘more psychotic’ than our mother did, and who were good and compassionate human beings who cared about others, and didn’t fling denial or “all the sacrifices I made and received only hate in return” in your face when past actions which made them look less than perfect were brought up to them. As she’s no longer claiming to be stalked or conspired against by anyone, but is still doing a lot of the other, non-‘crazy’ things she did which have hurt people in the past, I have only to conclude that the problem is not rooted in the ‘crazy’ things. We still don’t believe that forced treatment for her would be a good idea, or would help her in any way.

    Also, there’s the fact that the “she didn’t get enough treatment and we suffered the consequences” could just as easily be turned around and used against us as we were at various points in our life, since we weren’t exactly innocent of having acted “violently” either, for example, among other things. I mean, we remember very clearly why we did those things, even if we couldn’t put it into words during the time when it was going on, but other people in our family *could* turn around if they wanted and claim that we were the ones who had stolen “what I was supposed to be doing” from them, and set themselves up as the Martyr with Mentally Ill Relative.

    People react to circumstances, and when they react in ways that result in direct or indirect harm to those around them, too many people seem to close off the paths to understanding and discussion when those circumstances are past. Either by blaming it all on an ‘illness’ or ‘condition’ and thus destroying all chance for the person’s actions to ever be made explainable, beyond “that’s what Those Kinds of People do,” or by denying the complexity of human relationships and insisting that anyone who’s ever hurt you is an evil abuser whom you must sever all your ties with. (Not that there haven’t been times when we were definitely better off cutting all contact with someone, but we’re just tired of the survivor movement attitude that to have contact or attempt for reconciliation with someone who hurt you in any way, shape or form amounts to ‘saying all the abuse was okay’ or whatever.)

  23. I think that when people talk about what they are ‘supposed’ to do, they are really saying that in our society we enjoy a certain amount of freedom to spend our time as we wish. When something consumes most or all of that time, people can feel cheated.

    Certainly, caring for a disabled family member can consume most or all of one’s time. I think it is outrageous to claim that your family should give so much of themselves and not have any right to say that they are unhappy about it.

    Let’s put some numbers to it. How many hours per week are you ‘supposed’ to be spending on the internet? How many hours per week are you ‘supposed’ to be working to support yourself? Typical adults are employed 40 to 50 hours per week. In addition, typical adults take care of all of their own needs. They clean, cook, shop, repair, plan, etc.

    In a nutshell, I think that if you are capable of writing blog entries that are several pages long, you are also capable of earning some income. Many typical adults have jobs where they work at home using the computer. An example of such a job would be processing insurance claim forms.

    In my mind, what we are ‘supposed’ to be doing is based to some extent on fairness. I don’t think that anyone is ‘supposed’ to be providing for someone else who makes no effort to do for him/herself.

    If someone is disabled, and therefore cannot provide for themselves in every respect, our society does fill the gaps. I think that it is terribly unfair to take advantage of our society’s generosity and simultaneously demand that society be reshaped to meet your every whim.

  24. I think that when people talk about what they are ’supposed’ to do, they are really saying that in our society we enjoy a certain amount of freedom to spend our time as we wish.

    That is in part because our society is structured around the desires of a minority of people (at least as taken across a lifespan), and other people’s lives are destroyed in order to meet the so-called needs of that minority. By “lives are destroyed” I don’t mean “lose recreational time,” I mean “live in institutions”, “die”, “live an entirely or almost-entirely segregated life”, etc. This becomes background, and non-disabled people acquire a massive sense of entitlement to their “right” to not have the rest of us inconveniencing them.

    And by “our society”, you really mean a tiny privileged segment of our society. I grew up in the first generation in my family on either side to come close to fitting into that segment, and surrounded by enough stories from immediate relatives to always be aware that this was a luxury and not a given.

    Certainly, caring for a disabled family member can consume most or all of one’s time. I think it is outrageous to claim that your family should give so much of themselves and not have any right to say that they are unhappy about it.

    My family consists almost entirely (possibly entirely) of disabled people (by modern, suburban, white American definitions of disability), going back generations on both sides. The relative that provided physical assistance to his mother most of his life, is by modern definitions autistic and she provided a good deal of assistance to him as well. So were several others in his immediate family, along with one person with an intellectual disability and a couple more with learning disabilities. You make it sound like this is a one-way relationship of the independent helping the dependent, but really it is the interdependent helping the interdependent — which by the way, regardless of your illusions about the matter, is everybody.

    I’m not saying my family is utopian — far from it — but I think that without using the word disability most of us have had culturally a far better clue about interdependence and disability than those who think they write the rules in the society I and my brothers (but not our parents or extended family, so we had the benefit of a lot of exposure to other ways of doing things) were born into.

    And no we don’t sit around bitching and moaning about having disabled relatives, that would be about as ridiculous as us bitching and moaning about our relatives being American when we’re American too.

    In addition, typical adults take care of all of their own needs. They clean, cook, shop, repair, plan, etc.

    They actually take care of so few of their needs that the difference between their dependencies and the dependencies of a disabled person are more qualitative and cultural than quantitative.

    In a nutshell, I think that if you are capable of writing blog entries that are several pages long, you are also capable of earning some income.

    In a nutshell, armchair diagnosis does not impress me, especially from people who clearly neither know me nor understand much about the way skills fit together in the real world. If I could earn enough money on my own to live on, you’d better believe I’d be doing it (and if in the future I become able to, I’ll do that — I did used to have a job, you know).

    In my mind, what we are ’supposed’ to be doing is based to some extent on fairness. I don’t think that anyone is ’supposed’ to be providing for someone else who makes no effort to do for him/herself.

    I make every effort to do everything for myself that is possible to do for myself. I make so much effort to do that, that I routinely find myself in major health crises (physical health — like the time I spend in the emergency room trying to either get my lungs working again (like last night) or stop vomiting long enough to avoid dehydration). Your implication that I do not is not particularly credible, but your rhetoric is the sort of stuff that has always driven me to basically destroy my body in the pursuit of being something I’m not.

    I think that it is terribly unfair to take advantage of our society’s generosity and simultaneously demand that society be reshaped to meet your every whim.

    So do I, which is why I wrote this post. You think non-disabled people are the ones dying and being institutionalized and forced into poverty so that disabled people can have more leisure time? Think again, and take a better look around you.

  25. Pingback: The Bones My Family Gave Me « Ballastexistenz

  26. Pingback: Caregiver angst writing – Kitaiska Sandwich

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  28. Oh my…. Dwight, are you for REAL??? Gosh… don’t ever enquire about whether you might have borderline, paranoid and narcissistic personality disorders, or you just might find yourself ONE OF US! ONE OF US! ONE OF US!

    The egocentricity, complete lack of empathy, paranoia, resentment and violence of your comment is … well … (stoopid!!!) uh… just a little worrying. Good luck to you… ummmmm

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