Archive for Aging

Why I Oppose the Vermont “Death with Dignity” Bill

March 23, 2011 Rachel Ableism, Aging, Disabilities, Doctors

[Published in The Commons, March 23, 2011]

“Death with Dignity” Bill Promises Only Indignity

The least costly treatment for any illness is lethal medication. –Walter Dellinger

When I was younger, I fully supported physician-assisted suicide for terminally ill people. I believed that people who are dying should be able to decide when and how the end arrives, and that physicians should be able to make the process as painless and as dignified as possible.

After all, isn’t the decision to end one’s life a personal one? Doesn’t the right of self-determination dictate that one should have control over deciding the manner of one’s death?

If physician-assisted suicide had no consequences beyond the life of the person in question, the answer to both questions would be a resounding “Yes.” But living in society means that when a decision has a serious, negative impact upon the lives of others, we must limit a person’s ability to carry it out.

And so, as I reflect upon the consequences of legalizing physician-assisted suicide, I now find myself against it. The so-called “Death with Dignity” bill before the Vermont Legislature, if passed into law, would have a profoundly negative impact upon the lives of people who do not wish to avail themselves of its provisions.

In reading the bill, I find myself deeply troubled by the criteria by which one is eligible to choose physician-assisted suicide. So long as the patient is fully competent to make an informed decision, the only requirements are that he or she “must have a terminal illness and must have fewer than six months left to live.” A terminal condition is defined as “an incurable and irreversible disease which would, within reasonable medical judgment, result in death within six months.”

Now, in almost all discussions that I have ever had in my lifetime about this issue, proponents of physician-assisted suicide have always argued that it is simply inhumane to allow a human being to live in a state of agony, and that physicians must provide a quick and painless way out. The possibility of unendurable pain has always formed the basis on which most people have argued for the right to die.

But the “Death with Dignity” bill says nothing about ending one’s physical pain. This omission may derive from the fact that most kinds of physical distress can now be managed by medication; except for certain kinds of neuropathy, it would be difficult to identify a condition that would cause untreatable levels of pain. If such is the case, why would someone with six months to live want to end his or her life prematurely?

The answer lies in the word “dignity.” The bill’s proponents argue that one should be able to maintain one’s dignity in the dying process. And what are considered the barriers to dignity? In reading the words of those who support physician-assisted suicide, I have learned the following: It is considered undignified to be unable to toilet oneself. It is considered undignified to wear a diaper. It is considered undignified to be in a wheelchair. It is considered undignified to be dependent on the care of others. To some, it is even considered undignified to no longer be able to participate in so-called “normal” activities.

By implication, the bill suggests that finding oneself in any of these conditions is a perfectly valid reason to commit suicide.

I find this kind of reasoning both dangerous and deeply insulting. There are many, many disabled people who are unable to toilet themselves, who wear adult diapers, who use wheelchairs, who depend upon the care of others, and who cannot participate in the activities that typically able-bodied people take for granted. And, as should be obvious to all thinking people, their lives have the same inherent dignity and meaning as the lives of other human beings.

That we equate dependency and the wrong undergarments with indignity is nothing more than our own cultural blindness. It is a choice that we make as a society, and nothing more.

To equate disability — especially severe disability — with indignity is dehumanizing. And to imply that any of these conditions is a reasonable basis upon which to commit suicide is to devalue the lives of people who live with these conditions for years, decades, and lifetimes.

This kind of devaluation is the greatest possible indignity that a disabled person can suffer, and it leads to all the many indignities with which disabled people so often must contend: isolation, exclusion, indifference, resource scarcity, financial insecurity, and vulnerability to abuse. Such indignities have nothing to do with a state of being disabled. They have everything to do with a society that devalues human beings who are not typically able-bodied.

In such a society, we must not avail people the option of ending their lives because they have internalized a fear and hatred of disability. Instead, we must love and support people through the process of dying, a process that comes to all of us.

After all, the decision to end one’s life does not take place in a vacuum. It takes place in a society that devalues those who are fragile, dependent, and vulnerable. If, as a society, we communicate that disability is undignified, that true worth derives from independence and “productivity,” and that we support suicide for those on the “wrong” side of the equation, how many people can bear up against that sort of thinking and make a truly independent, empowered decision at the end of life?

How many people, in the midst of the dying process, are even aware that the value system in play is arbitrary and prejudicial?

Certainly, there are provisions in the proposed bill that seek to ensure that people make decisions free of outside pressure, but realistically speaking, such safeguards provide no guarantees. A person in a weakened physical condition, dependent upon family members for housing, medicine, transportation, and care, is unlikely to tell a doctor that the people upon whom he or she depends are exerting pressure to end it all.

This kind of pressure can become magnified when money is at stake; family members have been known to feel that it is better to safeguard an inheritance than to spend it on expensive care.

Given that family members can feel this way, imagine what pressure the insurance companies would bring to bear upon a person when suicide is an option. When people who are non-ambulatory and dependent are considered to have lives without dignity, it is not unreasonable to assume that, in a healthcare economy of scarce resources, cost-benefit analyses will come out in favor of those considered “more deserving” — that is, those who have the potential to survive and to become “productive” once again.

Treatment will be denied people considered unworthy of it, but suicide will always be covered.

Would such decisions contribute to the dignity of anyone with a serious medical condition? Not by a long shot.

A number of Vermont disability and healthcare groups oppose physician-assisted suicide, including the Vermont Center for Independent Living, the Vermont Coalition for Disability Rights, the Vermont Medical Society, the Vermont State Nurses Association, the Vermont Organization of Nurse Leaders, and the Vermont Alliance for Ethical Healthcare. National organizations such as the American Medical Association (AMA), the Disability Rights Education and Defense Fund, and Not Dead Yet also oppose it.

Please add your voice to the chorus of opposition to the “Death with Dignity” bill. Let your legislators know that its provisions threaten to deny each of us the dignity that we deserve at the time of our greatest need for the compassion and respect of others.

We are all fragile. We are all vulnerable. And we all deserve to live in a society that respects and safeguards the inherent worth and dignity of every life.

© 2011 by Rachel Cohen-Rottenberg

33 comments

On Difficulty and Disability

February 23, 2011 Rachel Aging, Disabilities, Hearing, Self-Advocacy

Difficulty is not a welcome concept in our culture.

Everything is supposed to be easy. We have commercials that promise us a life of comfort. All we have to do is buy the right recliner, drive the right car, follow the right weight-loss program, or purchase the right labor-saving devices. The most valued people in our culture are young and able-bodied because, let’s face it, life only gets more difficult with age or disability.

The difficulties are physical as well as social. As much as I value who I am, I am not one to say that my disabilities are physically easy; add in the constant necessity of self-advocacy and the frequent experience of exclusion, and I’ve got a life that doesn’t come close to the ideal of ease and comfort that every advertisement tries to sell me.

It’s becoming clear to me that a great deal of our culture is based is the lie that life is supposed to be easy. And I’m coming to feel that this lie, in itself, is responsible for a great deal of the struggles that we face as disabled people.

While I’ve had the unbelievable privileges that come with being white, American, middle class, and educated, I’ve also had my share of hard times. For most of my life, I’ve gotten through the hard times by thinking, “Well, next year (or when I graduate/get married/have a baby/buy a house), life will be easier.” Sometimes, it has gotten easier (before it’s gotten harder again), but lately, life just feels plain difficult. My hearing condition take a lot of energy, a lot of discipline, and a lot of work. It is what it is. There is no changing it. At some point, I might grow so accustomed to my disability that it feels easier to carry, but I’ve stopped setting my sights on that mythic day. It might come, and it might not. Who knows? At this point, I have to stay with what is. I am much more in the present moment than I have ever been, simply doing the work that needs to be done.

But sometimes, I still catch myself thinking, “What the hell happened? Life is supposed to be easier.” And trust me when I say that thoughts of how life is supposed to be make the life one is actually living so much more difficult. The dissonance between the ideal and the real is both draining and painful.

And so, of late, I’m coming to accept that life is difficult. I think it’s difficult for most people on the planet. In the rich countries, we get desensitized to this fact—partly because we’re promised a “happily ever after,” and partly because a lot of people in the rich countries actually have it pretty good a great deal of the time. So, because many folks don’t see the kinds of lives that most people live, they become unfamiliar with the idea that life is full of harsh and painful things. And when they come up against those harsh and painful things in their own lives, they panic, because nothing has prepared them for the inevitable storm.

I’ve come to feel that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing. Our very existence flies in the face of the myth that, with the right combination of hard work, positive thinking, willpower, and possessions, life becomes what it’s “supposed” to be: safe, easy, and fair. Our interruption of the cultural myth is one of the reasons that all disabled people, at one time or another, have the experience of feeling invisible, even when in plain sight. It also explains why our attempts at inclusion are met with everything from good intentions that miss the mark to the mind-boggling experience of outright hostility.

If you weren’t born with a disability, but you live long enough, aging is sure to take you out of the camp of the typically able-bodied. Dealing with that change, at an advanced age, can be very hard. For the past few years, my husband has been going down to New York City, on a regular basis, to visit and care for his dad. At 94, his dad is fortunate to be able to live in his own apartment but, as the years have gone by, he has lost more and more of his ability to do the things he’s always done. These days, he is physically very frail and requires a great deal of assistance. Every time Bob visits, he hears his father’s constant refrain: “I’ve lived a charmed life. It wasn’t supposed to end up this way.”

And I hear him. I really do. Despite all the work I’ve done, I’ve heard those words coming from deep inside me, too. In these past several years, I’ve said to myself many times: “This is not how things are supposed to be.” So many of us are unprepared for the harsh realities.

In many ways, I’m lucky to be struggling with these realities at 52. It would be much harder to face them, for the first time in my life, in my 90s. I’m fortunate to be learning that, while it’s a long road from pursuing ease to grappling with difficulty, it’s also a long road from life being difficult to things being impossible. There is a pervasive tendency in our culture to elide the two, as though any difficulty is simply out of the question. From this confusion of the difficult with the impossible comes the trope of the “inspiring cripple” (and its counterpart, the “inspiring caretaker”). It’s as though typical people look at us and think, “Oh, you are so inspiring! If that were me, I would find it impossible!”

Sometimes, when I run across this kind of thinking, I just want to shout, “No, no, no! As long as we’re alive, difficult is not the same as impossible!” The two may look like the same thing to an outside observer, the two may even feel like the same thing in most people’s experience, but they are not the same thing. At all.

We learn to adapt. I’ve adapted quite well and found a number of creative ways to work around my difficulties. I can’t say that I’ve adapted to being treated in all the ways that disabled people are treated in this culture, but give me time. I’m working on it.

© 2011 by Rachel Cohen-Rottenberg

25 comments

How I Feel About Those Who Want a Cure

September 15, 2010 Rachel Ableism, Aging, Critiques of Autism Theories, Empathy, Marginalization, Parenting

Please be warned: If you’re hoping for an anti-curebie tirade, you won’t find it in this post. Likewise, if you’re hoping I’ll say that autism is a disease that must be eradicated, you also won’t find it in this post. In other words, I feel pretty certain I’m going to disappoint anyone who wants me to pick a side and stay there, but the world is not a black-and-white place, and I’m not going to pretend it is—even if you think that being autistic means that I automatically see everything in black-and-white terms. (And, by the way, if you carry that belief about autistic people, I suggest you take a look at your own black-and-white thinking.)

So, here’s the thing: I’ve been reading fairly widely lately in the world of autistic people and their parents, and to put it mildly, my sensitive soul is in an uproar. I’ve been reading posts by parents who compare autism to cancer. I’ve been reading posts by parents who think that vaccines cause autism. I’ve been reading posts by parents who think that we’re in the midst of an “epidemic” of autism. I’ve been reading posts by parents who want to find a “cure.” As an autistic person, I recoil from these kinds of sentiments, and I feel to the core how damaging and how degrading they are. For me, dealing with the psychological and emotional impact of them is far worse than any challenge that arises from being autistic, by several orders of magnitude.

But I can’t just dismiss these parents as narrow-minded people. Even if some of them fit that description, I can’t dismiss them. They are human beings, after all, and something is driving them—something more than the privilege of defining “normal” and a sense of entitlement to children who fit that definition. As a parent, I think I understand it. It’s fear—not fear of autism per se, but fear of what is going to happen to their children as they grow into adulthood and one day lose their parents. Any parent of a typically abled child knows what I’m talking about: the way you worry, from day one, about how other people will treat your child, about whether the child will be hurt by words or deeds, about what will happen when you watch your child go around the corner alone for the first time, or cross the street alone, or ride a bicycle to the corner store, or go on a date. My daughter is getting ready to leave home and spread her wings, and the only thing that keeps me from going into a raw panic about watching my only child move into a world of unscrupulous, nasty, violent people is that I can say to myself, “I stumbled into life with far less support and far less savvy than she has, and I survived.”

For a parent of a disabled child, the fear of what will happen to the child in adulthood must be immense. Who will be there to help your son or daughter when you are gone? Who will assist with daily living tasks? Who will listen? Who will be kind? Who will be welcoming? Who will love your son or daughter as you do? I am a disabled grownup with the sheer good luck of being financially secure, and still, it’s no picnic out here. It’s damned lonely. It’s damned difficult. It’s a very vulnerable existence to live in a world that doesn’t understand me and that, with some very notable exceptions, doesn’t care to.

Personally, my solution to this unhappy situation is to advocate, advocate, advocate: for services, for accessibility, for accommodations, for respect, for open-mindedness, and for an inclusive society for everyone. My solution is not to find a “cure” that will make all of us alike. The solution to anti-Semitism isn’t to do away with Judaism, the solution to homophobia isn’t to do away with homosexuality, and the solution to a world that not-so-secretly hates autistic people is not to do away with our neurotype. The solution to cruelty based on difference is not to erase difference. It’s to build a just and loving world that treasures difference and treats people with dignity.

But look at the world. Does it look like it’s going to become a just and loving place any time soon? Here in the US, we’ve got an economy that’s a wreck. We’ve got towns that are cutting basic services, like having police officers and firefighters on duty. We’ve got people who have to go to court to get legally mandated services for their disabled kids, bankrupting themselves in the process. We’ve got a society that treats most people badly—a society where you’d better hope like hell you don’t get sick, because if you do, either you won’t have health insurance, or you will be struggling with your insurance company for payment while you’re throwing up from chemotherapy. And amidst all this, you’ve got people living with the panic, every day, of sending their autistic children into this kind of world. I can understand the panic and the vulnerability. I can understand that, when faced with the idea of changing the world versus finding a “cure,” some people believe that finding a “cure” seems the more hopeful option—especially if the “cure” is to get people simply to stop vaccinating their kids. People are more hopeful about the miracles of modern science than they are about the capacity of human beings to treat each other with a shred of dignity.

So, yes, I have empathy for where these parents are coming from. I just wish that these same parents had anything approaching the same level of empathy for me. Instead, when I try to discuss anything, one of two (logically contradictory) things happens:

1. I am ignored because I am not autistic enough. The very fact that I can write, express empathy, give birth, and have a good marriage means that I just don’t know what I’m talking about when it comes to autism—that I’m not like their children, that I have no right to speak about their children’s rights, and that I’m too “high functioning” to get it. These people didn’t see me growing up. They didn’t feel what it felt like. They didn’t see me stumbling from one failed friendship to another. They didn’t see me getting bullied and victimized. They didn’t see all the tears, all the pain, all the hard work, all the loneliness. Of course, if I’d remained a victim, I’d probably get more credibility. Somehow, the fact that I’ve managed to find happiness actually works against me. I’ve made a life for myself without IEPs, without early intervention, without occupational therapy, without social skills classes, and somehow, that means that I’m not really autistic. Instead of having empathy for how hard all that was to do on my own, without any support, people take it as proof that I’m not like their children after all. It’s as though autistic people got created by the DSM and early intervention programs, as though we haven’t been here all along, for generations, for centuries, struggling like crazy to stay safe in a world we don’t really understand and that doesn’t really understand us.

2. I am ignored because I am autistic. I find this dynamic happening on some of the “mom blogs” written by neurotypical mothers of autistic children. It’s just like real life. I show up as a mother, and for a little while, it works. I show up as an autistic, and it’s like I’m not even there. I’ve had it happen over and over: I’ll make a comment on a post, and the blogger will respond to every other comment but mine, no matter how short and sweet and lacking in substance the other comments are. And no, it’s not just a coincidence, and no, I’m not just taking it personally. To quote Laura, my fellow autistic blogger, “I’m an Aspie, not a dumbass.” Interestingly enough, I do not find this dynamic on the “dad blogs” written by neurotypical fathers of autistic kids. In fact, they seem very much to want to hear my point of view, because it gives them insight into their own children.

Now, I know that there are neurotypical moms out there who read my blog for these same insights, and I am not talking about you. I am talking about the women bloggers who exclude me the way that other women have always excluded me: because I’m different, because I don’t engage in small talk, because…who knows why? Why do people exclude autistic adults? Is it too scary to think about the fact that their autistic children will one day be us? If I succeed at anything, it seems, I’m not autistic enough; but if I can’t attain that elusive and illusory goal of becoming indistinguishable from the neurotypical majority, especially as a woman, then I’m instantly devalued for being autistic. My autistic brain will never understand how people paint themselves (and us) into a corner like this, and to tell you the truth, I think that speaks very well of my autistic brain.

So, to all the people looking for a cure in order to render us “normal,” please consider what “normal” means in conversations about autism:

  • It’s “normal” to be told that I’m both not autistic enough and not welcome because I’m autistic.
  • It’s “normal” to exclude me because I don’t think like you and talk like you.
  • It’s “normal” to tell me that I can’t speak on behalf of other autistic people, because I’m not like them, but that neurotypical people can speak on behalf of autistic people, because they know better.
  • It’s “normal” to tell us that if we can speak for ourselves, we can’t be autistic, and that if we can’t speak for ourselves, we must be autistic, and therefore, other people can speak for us.
  • It’s “normal” to forget that autistic people have always been here.
  • It’s “normal” to want to make everyone just like you, without reflecting upon why you want to do that and whether your version of “normal” is something that everyone should aspire to.
  • It’s “normal” to say that your autistic child is the product of defective genes, toxic chemicals, or evil vaccines.
  • It’s “normal” to talk about us as if we’re diseased.
  • It’s “normal” to think that this kind of talk is going to do anything to create a world that is safe for your child.

If you describe your child’s way of being as the result of some sort of defect or toxin, you are not setting up your child to have any dignity or respect. At best, you’re setting up your child to be pitied, and being the object of pity is no defense against bullying, against discrimination, against becoming devalued by people who can’t think outside the “normal” box.

Someday, there will be a “cure” for autism. It will be called “pre-natal screening.” For those who can afford the test and who are willing to abort a child, autism will be a memory. But you will not get rid of us. There are many more people for whom such a test will not be available, and for whom abortion is not an option. Meanwhile, there are (and always will be) living, breathing autistic people whose lives, whose thoughts, and whose experiences are being devalued as some sort of environmental or genetic mistake.

One of those living, breathing autistic people is me. So you’ll excuse me if I’m not in a hurry to emulate your example of “normal,” but it really doesn’t seem that you have my best interests at heart.

© 2010 by Rachel Cohen-Rottenberg

17 comments

Interview at Aspitude!

September 12, 2010 Rachel Aging, Disabilities, Employment

A little while ago, I did an interview with Elesia Ashkenazy for World Autism Interviews on the subject of employment, autism, and disability. The interview is posted here on Aspitude! Please give it a read and share your thoughts.

© 2010 by Rachel Cohen-Rottenberg

No comments

In Celebration

May 31, 2010 Rachel Aging, Communication, Spectrum Pride

When I gave birth to my daughter, I was 34 years old. I remember quite clearly watching the nurses weigh and measure her. I remember how loudly she was yelling when they bathed and swaddled her. I remember how calm and quiet she became when they put her into my arms for the first time, because she could once again hear the familiar sound of my heart.

And I remember thinking, “She’s brand new. We’re at the beginning. When she’s 18 and ready to leave home, I’ll be 52. I’ll be so old! That’s forever away.”

And this year, I’m 52, and my daughter is talking about going to California after she graduates high school.

Please be assured that this post is not another meditation on how fast the time goes, or how brief it all is, or how hard it is to let go, even though all of those things are true.

This post is about reaching a crossroads, about making a commitment, about finding the strength to face what comes. It’s about doing all the same things I did on that day that my daughter was born, except that now I do them in celebration of my own birth and my own life.

It used to be that I hated thinking about my birth. It reminded me of my parents. It wove me back into the fabric of who they were, because I had to remember who gave me my body, my eyes, my face, my DNA, my life.

But now, suddenly, I want to celebrate by giving myself the only gift worth having: the gift of myself.

Yeah, I know that sounds hokey, but I am not in a hokey mood. Far from it. I’m not talking about a kind of New Age “love and embrace the special soul that you are” moment. I’m not talking about a kind of religious “I, too, am a child of God” moment. And I’m definitely not talking about a psychotherapeutic “I am lovable and worthy of love” moment.

No, I’m talking about something much more fierce and powerful than that. I am making a commitment to take myself back. Here is my declaration of intention, toward which I will strive with all of my ability:

I will no longer do anything that hurts my body, whether other people understand or not. If speaking hurts, I will not speak. If hearing hurts, I will not hear. If being touched is beyond my ability to tolerate, I will not be touched.

I will not attempt to shoehorn myself into some model of non-autistic consistency, in which if I can speak sometimes, I must speak always, and if I can hear sometimes, I must listen always, and if I can be touched sometimes, I must accept touch always. Those days are done.

Sometimes, I will speak and I will listen with my ears, only because sometimes, in specific situations, with specific people, at specific moments, when I’m calm and rested, and a million other factors that I can’t define come into play, everything comes together and it doesn’t hurt. I can’t always predict those moments, but I will recognize them when they arrive, I will choose to engage them with integrity, and I will not be pressured into doing otherwise, by anyone.

I will protect my health by communicating with others in a way that works for me, even if it takes time and other people would like me to go faster. When doing business out in the world—at the grocery store, at the bank, at a tag sale, anywhere—I will use my iPod Touch and any other appropriate assistive technology at my disposal.

I will no longer be a victim, living in fear, apologizing for who I am, and meekly asking other people to accept me.

I will live with all the fierceness and fighting spirit I’ve had from the day of my birth, and I will not turn them over to anyone.

I will insist upon my right to be treated as a complete human being, in all times and in all places, and I will not back down.

© 2010 by Rachel Cohen-Rottenberg

6 comments

Embracing My Weirditude

April 7, 2010 Rachel Aging, Communication, Disabilities, Employment, Volunteer Work

In the past couple of months, I’ve been approved for services through the Vermont Division of Vocational Rehabilitation. I’ve been working with Will, my counselor, to put together an Individualized Plan for Employment (IPE). I was supposed to go for an intake inteview with another counselor today, but I’m sick with a sore throat and a cold, so I’m taking the rest of the week off to rest my very weary senses.

Working with Will has been a very positive experience. Will is Deaf, so we communicate by writing back and forth. He is very calm and moves very slowly, so my visual field doesn’t feel like it’s filled with lots of gestures and movement while we’re communicating. Going for an hour-long appointment isn’t tiring (when I’m well). I don’t have to talk, I don’t get overloaded, and (not surprisingly) I don’t feel anxious.

My main reason for beginning the Voc Rehab process was to find part-time work outside my home and feel like part of the world again. I didn’t want to work in an office, so Will gave me a vocational assessment test to see what else I might be suited to do. I finally chose to look for employment working with animals, either on a farm or in a shelter. I figured that working with animals would get me out of the house, keep me on my feet, give me something strenuous to do, and allow me to spend some time with sentient beings who don’t talk. I’ve got lots of experience working with dogs, cats, small mammals, chickens, goats, and sheep after living on a farm for six years, so I know what I’d be getting into. In other words, I’m not romanticizing the work.

However, I think I’m being little unrealistic about myself. As time has gone on, I’ve begun to wonder whether I could hold myself to a schedule of getting someplace outside my house at a regular time on a regular basis. I do get to the thrift store regularly, but that’s just two days a week for two hours a day, and it’s a volunteer position, so it’s flexible. They’re perfectly happy to have me repair quilts at home if that works better for me, so I have some good choices there.

But I worry about my ability to get to a paid job at a specific place, at a specific time, from week to week. I’m beginning to grasp that autism is a very inconsistent and unpredictable condition. Some weeks, I love being outside, taking walks, going to the store, and gardening. Other weeks, I just want to stay inside, all week. And some weeks, I’m somewhere in the middle. I used to think that I could pace things—go out one day, stay in two days—but I’ve found that there really isn’t a pattern that matches what my body actually needs. There are far too many variables affecting my senses to be able to predict how I’ll be doing from one day to another. For instance, I could take a long walk one day, and if no one were using power tools, or playing loud music, I’d come home in a far more relaxed state than if the sound of a buzz saw or a rock band found its way through my headphones. Or, if I went outside to garden and the road were relatively quiet, I would have a very different experience than if a lot of loud kids were outside in the street talking. And then there are the variables inside me: my level of energy, my mood, how sensitive I’m feeling, whether the internal abusers are awake, and so on.

Bob has been hinting that maybe, just maybe, looking for a job outside my house is not such a great idea. For a while, I kept thinking, “Gee, way to be supportive, honey!” but I finally got his point. I got his point, oddly enough, after I wrote my post about feeling like a freak. I realized that I was at an impasse. Do I try to hold myself to a schedule, and be conventional in some way? Or do I just embrace my weirditude and accept that some days, I’m like a billiard ball bouncing off the walls, and that some nights, I fall asleep in my clothes, and that often, I do not want to be interrupted from whatever fascinating thing it is that I’m doing?

The issue came up a second time as I began to consider the possibility of applying for disability benefits. Will said that the folks at Voc Rehab could help me with the application process if I wanted to go in that direction. He even said that, during the dreaded personal interview, the Social Security employee and I could communicate in writing, and that Will would be there for support. By no small coincidence, I also received my yearly Social Security statement around that time, which showed how much money I’d get if I were on disability: $1,890 per month. No small change. I worked a lot of years, and made a lot of money, and paid a lot into the system, and there is a part of me that thinks, “Hey, I deserve that money. I worked for it, and I burned myself out to get it!” But really, I find myself at the same impasse I’ve arrived at regarding work. Do I want to try to work with a conventional bureaucracy in a conventional way, or do I want to face the fact that I feel like I’m choking to death just thinking about it?

If money were an issue, I’d probably suck it up and go the disability route. But it’s not an issue. Bob and I are comfortable and our needs are pretty simple. So what do I want to do?

Answer: I want to work. A bit. At home. As a copy editor. For our local paper. Which is edited by a friend of mine. Who would be delighted to have me, if only as a volunteer. At first. I wouldn’t have to work at the computer. I could set my own hours. I could send in my copy with Bob. I’d be appreciated for the good work I do. And somehow, it would allow me to connect to an earlier time in my life, when I was working at home during my first marriage, when my daughter was small and we were homeschooling.

At that time, I felt like my world was so small; my marriage was falling apart, and I was feeling trapped. But really, when it came down to it, the kid, the homeschooling, and the job were all working great. In fact, it was great to work at home, because I could get up and take breaks whenever I wanted, I could start and end whenever I wanted, and I could wear whatever I wanted. Now, at a time when my daughter is getting ready to leave the nest, and I am going through a mid-life crisis to end all mid-life crises, it feels good and right to reach back and find something from my earlier life to bring along with me.

Will thinks that perhaps I could work at home and also work out in the community. He feels that with some training and accommodations, it may be possible for me to hold down a job outside my house. But he’s also willing to follow my lead here, and he can certainly try and help me find other work I can do from home. At this point, everything in me is saying, “Come on, Rachel. Just be eccentric, and inconsistent, and unconventional, and follow your own way. I mean, why stop now, when you’re getting so good at it?” :-)

© 2010 by Rachel Cohen-Rottenberg

6 comments

Autism, Illusion, and the Power of Despair

March 4, 2010 Rachel Aging, Disabilities, Eye Contact, Grieving

In this month’s issue of The Sun magazine, I found the following quote by Philip Slater:

“Despair is the only cure for illusion. Without despair, we cannot transfer our allegiance to reality—it is a kind of mourning period for our fantasies. Some people do not survive this despair, but no major change within a person can occur without it.”

Those were the perfect words for me to find at this particular moment of my life. I’ll try to explain why.

After I wrote my post about self-worth, I noticed myself living with the emptiness inside, and I saw that it wasn’t going kill me. In fact, I felt like a great burden had been lifted from my shoulders. All my life, I’d struggled with improving my sense of self-worth, and now I felt nothing but relief that I didn’t have to struggle anymore. I could stop going to war about it. I could move on. Or better yet, I could just sit still.

One evening, as I sat knitting, I found myself thinking, “Okay, so I feel no self-worth. I feel empty. Yup. Empty. It’s weird. It’s sad. It’s… Hey, this hat is really coming out well…” I was just sitting there with the homespun yarn in my hands, watching myself knit around and around on circular needles, thinking about Bob spinning the yarn, appreciating the fact that the lanolin was healing the cracked skin on my fingers, and not having the pressure to do or be anything in particular. After all, I was empty of worth. What could I possibly do of any importance? Such freedom!

And then, it came to me: The empty place inside is where my parents’ love should have been. I felt no self-worth because I had never felt any love from them. And then I thought about the sexual abuse and the despair I felt when it started. I was eleven, and that was the day that I started to lose my family forever. That man who abused me was not the same man who had thrown baseballs to me in the backyard. He was not my father. It was as though my father had died, and some other man who looked like him, and talked like him, had taken his place. My mother would never have believed me, and so she was gone, too. My brother was only eight. I wasn’t going to tell him. How could I? I didn’t even have words for it. In that moment, everyone was gone, and I was alone.

Since then, not one of my relatives has expressed any love, any compassion, or any concern for me. Quite the contrary, in fact. And all these years and years of losing people started one night when I was eleven, and somehow, I knew it back then. I sensed what it meant for my life. And I was right.

I accept these losses now, but sometimes, they make me very sad. My friend Ben said that it’s okay to be sad about it all. How could I not be sad? Bob has said many times that the emotion I express most is sadness. Of course it is. How many people have I lost over the course of my life? I can’t even keep count of them all.

And then there was the despair of watching my dreams for my life drift away as my disabilities became more and more apparent. As much as I love the gifts of my autism, I’ve had to grieve for that person I thought I was, and at times, the grief has filled me with despair so deep that I didn’t know whether I’d ever be able to climb out of it.

Last week, I talked these feelings over with the doctor who manages my medication. I see him once a month for an hour. As I described what I was going through, he said that my grieving seemed to be going well. He said you know that your grieving is going well when the sadness wells up inside and you start to cry, and then at some point, you notice that you’re thinking about getting a pizza, or that you’re remembering an afternoon with your best friend when you were ten. You grieve, and you leave room for other things to enter. And then he leaned forward and said, “I’m going to tell you a secret. The grieving never ends. You just learn to carry it differently. Nobody wants to admit it, but it’s true.”

Another piece of relief, of a burden being lifted. You mean, I don’t have to resolve this grief? You mean, I don’t have to go to war against it? You mean, I don’t have to feel like an utter failure because I feel sad? How utterly fantastic is THAT?

After all, life is predicated on loss. Life ends. Jobs end. Friendships end. We end. Everything is fragile and finite. Broken-heartedness is one response to all of it. It’s my response to all of it. I’ve been broken hearted all my life. I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively, while at the same time I’ve a) been assaulted by the very people who were supposed to love and protect me, b) had my senses assaulted by the world around me, and c) had my mind and heart assaulted by the madness of the world. I can’t even read a newspaper anymore. The so-called “healthcare debate” drives me crazy. How can adults in the richest country in the world not agree on how to provide universal healthcare? How can they be so arrogant and so unbearably stupid? How can they strut and accuse and lie and play politics with people’s lives?

It takes a spiritual warrior to be broken hearted in a culture like this one.

In the midst of all these layers of sadness and despair, I’ve been burning away the illusions of who I was supposed to be. I was supposed to be able to do anything I wanted. And what were all of these nebulous, terribly important things waiting for me in my future? I don’t even know. They were someone else’s illusions, I suppose. I just took them on. Now the illusions are gone, and I can feel the relief of being exactly who I am. I walk around town in a big old headset, communicate with people in writing, don’t make much eye contact, and that’s who I am—right now, right here, at this very moment.

The rest is either a dream of who I was supposed to be, or the memory of who I no longer am. I was once the mother of a small child, but no more. I was once married to her father, but no more. Bob and I once led services together, but no more. I used to work full-time, but no more.

If I keep living in what’s past, I’m living in a world of illusion, and my whole life has been about truth, about speaking the truth to my family, about dealing with the consequences, about never being able to do anything other than say what’s real, despite the fact that it rarely gets me what I want—compassion, support, friendship. But it’s who I am, and I love that it’s who I am. My whole life has been about trying to see things as they really are, and about trying to speak about them as they really are. And somehow, the despair I’ve felt has burned through layers and layers of illusion, and left me with the time and the willingness to look at the truth of my life.

At times, I’ve been afraid that my despair would swallow me alive. Some people don’t survive despair. I’ve wondered at times whether I would survive it. But then I remember that I have a fierceness inside me, like an unquenchable flame. Somehow, the despair has taken my fierceness and used it burn through so many illusions that I am left empty and can begin to live.

© 2010 by Rachel Cohen-Rottenberg

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Making Friends with My Eccentricity

January 24, 2010 Rachel Aging, Belonging, Friendship, Happiness, Spectrum Pride

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

© 2010 by Rachel Cohen-Rottenberg

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Some Thoughts on Autism and Bullying

January 11, 2010 Rachel Aging, Bullying, Childhood, Communication, Spectrum Pride

In my last post, I discussed my commitment to move ahead with my life in the knowledge that I have no extended family. That reality is still very clear to me, and I got a very vivid reminder of it last night.

As you might have noticed, I have a rather large extended (former) family, with many, many cousins. At this moment, I’m turning my attention to a cousin I’ll call Boris. I haven’t seen Boris in 30 years or more. I never knew her well, but over time, a couple of people in the family made remarks to the effect that she might have been abused as a child. As cousin Ralph might point out, I have no way of knowing one way or the other. Boris herself has never said anything about it. If she did, I would believe her, but we’re never going to get anywhere close to that conversation.

Read on for details.

After I had scattered the ashes of my hope for an extended family, my conscience started to bother me about Boris. What if she were another survivor? What if she thinks she’s the only one? It didn’t feel right to simply go away without saying something to her, but what should I say? I stewed on it for awhile, and I finally realized that all I needed to do was to give her my contact information, in case she ever wanted to get in touch with me. (Please stop groaning.) So, I sent her a message that was as benign and as neutral as I could possibly make it:

“Hi, I’m your cousin…I now go by my Hebrew name of Rachel, and I’m married. If you ever want to contact me, you can reach me at rachel.vermont@comcast.net.

I hope that all is well with you.
Rachel”

I knew that the family lie had made it to the outermost reaches of my (former) family, so I knew it was entirely possible that the lie had made it to her door. I felt good in my heart for having done the ethical thing, and that was all that mattered to me. And so, I was prepared for her to ignore me, or to simply say “Fuck off.”

But no. Nothing is that easy in my (former) family. I’ll paraphrase Boris’ response. She said:

1. She doesn’t have a cousin anymore.
2. Her losing me as a cousin was my choice.
3. I have to live with my choice, so go to hell.
4. If I ever contacted her or any member of her family again, she would seek out a civil harassment restraining order.

I will never have to get all “Aspie-and-wordy” again to describe the toxic nature of my original family system. You have the whole family dynamic in a nutshell, right here: shunning, blaming, distortions, lack of compassion, and unprovoked threats. There it is. All on a platter, along with my head.

And why? Because I offered someone I barely know my email address and said I hoped she was well.

Okey dokey.

So, then I got to talking with Bob and with a good Aspie friend of mine about this latest turn of events, and I suddenly realized that I was being bullied. Moi, bullied? I thought. Moi, with a blue belt in karate? Moi, with 25 years of therapy under my belt? Moi, the mama bear who has been known to risk reputation and throw social graces to the wind on behalf of her (now nearly grown) little cub? Yes, I’m afraid so.

And then, I thought, wow, that’s exactly what happened with my parents and with my brother. They bullied me. My father bullied me with physical pain, with unwanted touch, and with threats of harm. My mother bullied me with lies, ridicule, and manipulation. My brother once pinned me to a car because I disagreed with something he said, and he shunned me when I broke contact with my parents. And then there was Uncle Sylvia, and our disastrous conversation of three years ago, in which he ridiculed me for asking for love and compassion over what I had suffered. And come to think of it, every single family member who has heard the lies about me and believed them has been bullying me with their silence and their rejection ever since. It’s absolutely amazing to finally realize it.

All this bullying, all directed at me. Innocent, good-hearted, clueless, Aspie me. But why? I have a few ideas. (Feel free to add your own).

1. I walk into every room thinking that people are all set to receive love, attention, and goodness from me. I just have to be clear and non-threatening, and we’ll all get along, right? What could be simpler? Ha ha. It’s not bad to want to be loving and attentive, but the expression “pearls before swine” keeps coming to mind.

2. I am very childlike. I have a kind of innocence that all the abuse in the world has never been able to take away from me. So, I figure that people feel powerful bullying an innocent person. Or something. I have no idea. It’s just a guess.

3. For much of my life, I tried so eagerly, so earnestly, and so innocently to figure out the rules and play by them that people began to see me as defenseless. And, as a kid, I was defenseless, just as any other kid. But for me, there was an extra element of defenselessness, because little autistic me could not understand lying, cruelty, social rules, and social hierarchies. I just kept trying to make sense of them and be everyone’s friend. That made me more than a little vulnerable.

4. Despite my once-unquenchable desire to figure out the rules, fit in, and be normal, I have always been the Achilles heel of the family. Why? I’m an Aspie. I speak the truth. I break illusions. As such, I am the person who is the ever-present reminder that the family ain’t nearly as perfect as everyone would like to pretend it is.

5. I am the person who left the bullies behind. A dysfunctional family system cannot tolerate people leaving just on account of they’d rather not be bullied.

So, I reach out to someone genetically related to me, on the off chance that she might need it, just to feel that I’ve done the right thing, and the whole family system comes roaring right at me.

God, I’m having a serious autism moment. The gig has been up for a long time, and I’m the last to know.

Comments and hugs both appreciated.

© 2010 by Rachel Cohen-Rottenberg

9 comments

An Aspie’s-Eye View of the Afterlife

October 18, 2009 Rachel Aging, Childhood, Spiritual Beliefs

Don’t worry: I’m not obsessing about death.

In fact, I’m planning on living on planet Earth for another fifty years. I figure I’ll need at least that long to understand my life and write about it. It’s a good plan, don’t you think? While I don’t discount the indisputable wisdom of the Yiddish saying, “If you want to give God a laugh, tell him your plans,” I know that God will make an exception for me. How do I know this? It’s simple: I’ve communicated my needs clearly, I’ve come up with a sound plan, and God knows, I need predictability.

So, while my tenure here on earth is assured, I often wonder what will happen after my soul departs my (101-year-old) Aspie body. In fact, over the course of my lifetime, I’ve had a number of theories on the subject, all of which I will now impart to you.

1. Ages 4 to 9: Don’t ask because you can’t know.

This theory came courtesy of my mother after I asked her about God. I’d heard this “God” word from someone, and I’d wondered what it meant. Here’s how the conversation went:

Me: “Mommy, who’s God?”
My mother: “God created everything.”
Me: “Okay. So where’s God?”
My mother: “God is in everything. God is in you, in me, in the air we breathe, and even in the kitchen table.”

[At this point, I have my first mystical experience. I can feel God in every molecule of the air, very close to me, but not crowding me. Then, I look at the kitchen table, and it's radiant with light.]

Me: “Who created God? And who created the God that created God. And who created the God who created the God who created God?”
My mother: “Don’t go there. You’ll drive yourself crazy.”

For nearly every other moment of my childhood, my mother was an ardent atheist without a spiritual bone in her body, so I’ve always considered this conversation to be the product of some sort of Divine intervention. In addition, despite the fact that my mother had not been taught anything about Judaism, she somehow communicated one of its core tenets to me: the absolutely unknowable mystery that is God. At that moment, I grasped that not only was God a mystery, but that everything concerning God was a mystery, including the question of what happens before birth and after death.

2. Ages 10 to 12: We’re born, we suffer, we die, and that’s all there is.

This theory also came courtesy of my mother. It’s the core tenet of that good old-time religion called “Jewish atheism.” Yes, trust me, Jewish atheism is a religion. Sometimes, it’s called “secular humanism,” and sometimes it’s called “democratic socialism,” and sometimes, it’s just called “Get your Bible out of my face and allow me to make the world a better place than I found it.” In my parents’ case, it was called “We’re just a bunch of molecules bouncing around the universe with no purpose whatsoever.”

3. Age 13: I am definitely going to hell, and it will be very, very painful.

This particular stage in my thinking came from a televangelist whose name I can’t remember. Why was a nice Jewish girl like me watching a televangelist, you ask? Well, my parents always watched the Billy Graham Crusade on TV. They didn’t watch it for the spiritual content. They watched it rather like anthropologists who have no respect for their research subjects. I can remember my father, in particular, being appalled by the spectacle of fear being used to elicit faith. My parents detested religion, and to them, the Billy Graham Crusade was a prime example as to why.

But somehow, all the fear-mongering got to me. One night, while I was lying in bed, I turned on the little TV I’d gotten for my birthday and found a station on which a televangelist was preaching. He said that whether your sins are big or small, it’s all the same to God. If you don’t accept Jesus as your Lord and Savior, you will burn in the everlasting fires of hell. However, if you do accept Jesus as your Lord and Savior, every single sin will be wiped away for all eternity, and you’ll never have to worry again.

Oh my. I did not want to burn in hell. Definitely not. And it all seemed so easy: I could become a Christian, and all my worries would be over. I was a very worried little Aspie, so the deal sounded good. There was one catch, however: I was Jewish, and I was pretty certain my parents would throw me out of the house immediately if I became a Christian. 

So, for next three weeks, I spent most of my time obsessing over every small thing I had ever done wrong in my life. (I hadn’t lived very long yet, so my recall was quite good.) When I was finished with the backlog, I obsessed over all the little things I was doing wrong in the present, many of which I probably wasn’t even aware of yet. And then, of course, there were all those things I might do in the future. It was overwhelming. The more I thought about the inevitability of screwing up, the further I descended into a state of abject misery.

One Saturday morning, at Hebrew school, I told my friend Caryn what was going on with me, and she miraculously lifted the burden from my shoulders. Here’s the conversation:

Me: “The televangelist says I’m going to hell if I don’t become a Christian.”
Caryn: “You’re not going to hell.”
Me: “How do you know?”
Caryn: “You’re Jewish. We don’t believe in hell.”
Me: “You sure?”
Caryn: “Yup.”
Me: “Okay. I feel better now.”

4. Ages 14 to 22: “It’s not worth thinking about. After all, I’m immortal.”

5. Ages 23 to 33: “I want a husband, kids, and a career. I simply don’t have the time to spend worrying about what happens after I die. I’m too worried about what’s going to happen while I’m still alive.”

6. Ages 34 to 40: “If I’m a good person, I will have everlasting life (whatever that is). If I’m a bad person, I will simply cease to exist altogether. That wouldn’t be good.”

7. Ages 41 to the present: “I will be reincarnated many times, in many places, depending on what I learn in each lifetime.”

There is a Jewish belief in reincarnation called “gilgul,” which basically posits that we return to this earth many times in order to make things right from a past life or to help others along their life paths. This particular philosophy appeals to me tremendously, because it explains so much:

a) Why some people do so much evil and others do so much good. What can explain the fact that Adolf Hitler and Mother Teresa once inhabited the earth at the same time? Are some souls simply born evil and others simply born good? No, that can’t be. If we’re hardwired to be good or evil, then there can be no free will and no morality. So, perhaps, Mother Teresa had been reborn thousands of times and had learned profound wisdom along the way, while Adolf Hitler hadn’t been around much and was therefore operating under a series of extremely dangerous delusions.

b) Why I got born into my abusive family. It took me a long time to work this one out, but I’ve come to feel that I actually chose my parents. That does not mean it was okay that they were abusive, or that I asked for it. It simply means that my soul might have seen the potential lessons to be learned through them (without knowing the details), and that I decided that I might as well give them a try. I’m also thinking that if I were as impatient in the spirit world as I am in this world, I may have been getting restless with the whole “being between bodies” thing and acted rashly.

c) Why I’m autistic. Maybe in a past life, I was a smug neuro-typical person who thought I had all the answers. You can’t learn anything that way. So, I came back as a periodically smug autistic person who more than occasionally thinks she has all the answers.

Hey, I’m doing my best.

Of course, I don’t really know what will happen. I guess I’ll find out in the afterlife. Or not. Who knows?

© 2009 by Rachel Cohen-Rottenberg

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