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

You’re too polite sometimes……in my opinion………but that’s just me.

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.

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.

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.)

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.