Moving Beyond Blame in Abuse

A few days ago, Soaring Survivor wrote an interesting post on forgiving yourself in the process of healing from domestic violence. Forgiving yourself, she says, is harder than forgiving the abuser.

I always find myself thinking that my situation is almost unique, in that I myself was aggressive and my family responded with aggression to my behavior. Then I found out, I don't remember where, that in most situations of intimate partner violence, there is not simply one person who is the perpetrator and the other who is the victim. Rather, there tend to be some form of abuse on both sides. I am not saying that this is the case for Soaring Survivor, as I don't know her situation. What I mean to say is that my situation, involving sort of provoked aggression, is not as unique as I used to think.

This makes forgiving myself extra hard. I have forgiven my family, I think, but too often this comes down to trivializing what happened. I know that my parents weren't sadists, and I often say this to justify their actions. They did what they thought was their best.

Then a few weeks ago I read a response in a women's magazine from a person with borderline personality disorder to two parents who had complained about their children's BPD being attributed to abuse. The borderline patient said that even very ordinary parents make mistakes, and this can set off BPD in vulnerable people. Does this mean they're pitiful victims? No.

What I realize as I write this, is that maybe the hardest part of forgiving both yourself and the people who hurt you in your life, is shifting the focus away from the question of blame. Ordinary partners and parents (and children) act out violently, and accepting this is hard but necessary for both survivors/victims and the general public. Abuse happens, and the idea that only sadists perpetrate it, gets a whole lot of survivors/victims unnecessarily stuck in self-blame. Forgiveness may involve accepting what happened without letting it hold you back from living a fulfilling life. I'm still struggling with this.

Do Labels Matter?

Just a few minutes ago, I found a great post on Our Stroke of Luck about having a child newly diagnosed with autism and still realizign he's him. I struggled with my comment in a way, because I didn't want to say that autism doesn't matter. It's still a part of who an autistic person is. But it's not all. As Owen's mother writes in the post, he's still adoerable.

I am sometimes told I overemphasize how different I am from other people. I am trying to lessen this habit, because, even though disabilities are a large part of me, they're not all there is. I am also ssmart, have a cynical sense of humor, and am pretty strong-willed. I am a crafter, a blogger, a wife, an activist and a student. I know I've written about this before, but I keep struggling with this identity confusion thing.

One of the commenters on the post said that labels don't matter, love does. I disagree with the first part of this sentence. Labels are what define us, they're just not always negative labels or disabilities. All the qualities I listed above, are labels. Of course these labels make up a whole person, but it can be hard to see yourself or others as the whole person without using the labels that make up you or someone else.

I know what the commenter meant. A disability diagnosis doesn't make the disability real (and no diagnosis doesn't make it unreal). Especially if you were born with your disability or acquired it early in life, there's no way of knowing what you would've been like without it. A diagnosis may be a relief, knowing that your or your child's struggles are not due to laziness or all in your imagination. It may be depressing in the sense that this same reality - the diagnosis and accompanying prognosis - may shatter your dreams. It is an art to find the right balance between accepting and challenging your or your disabled child's prognosis. Labels should matter, but not so much that they become a self-fulfilling prophecy.

People Aren't Broken

After being told she'd be officially diagnosed as autistic, Autisticook wrote a post titled I'm Not Broken. I commented on this post, but wanted to expand on and generalize this a bit more.

I remember when in DID meetings, there were people who didn't want to have DID, and people who felt the DID diagnosis somehow validated them. I fell into the latter category and was often told I wanted DID too badly. The people who felt their diagnosis was validating, often said it made them not be crazy. "I'm not broken, I was traumatized," one person said, incidentally in the meeting in which I was kicked out for allegedly having imaginary DID.

In my journeys as an autistic, I learned a lot of what Autisticook describes: autistic isn't broken. In my brief travels through the natural multiplicity community, I learned the same of multiplicity. Then I heard dissociators say they aren't broken but traumatized, almost as if their perps are responsible for every single thing in the dissocitors' lives that is remotely "broken", and I cringe.

I don't care who or what made you the way you are. People aren't intrinsically broken, and using neurology or abuse history or whatever as a reason for not being broken, only makes other people, who don't share this same attribute, look broken. Like, are people broken if their behavior can't be directly linked to trauma or neurology? I'd say they arent'. Their behavior may be unacceptable, but so may the behavior exhibited by autistics or trauma survivors.

I am not saying you can't use your neurology or experience as part of your identity. I do this all the time. What I am saying is that a diagnosis is at once no excuse for unacceptable behavior, and unacceptable behavior doesn't make you broken regarldless of your diagnosis or lack thereof.

Non-Disabled Standards and Afjustment to a Disability

When in counseling at the blindness rehab center in 2005, the psychologist, herself blind from birth, had me read her college thesis. I don't remember its exact topic - it was soomething about adjustment to disability -, but I do remember her outlinign stages of becoming aware of nd adjusted to disability:

1. Adhering to non-disabled standards while not feeling one's disability is a handicap. This is the stage where a person is mostly unaware of their difference from non-disabled people. People with an acquired disability may not go through this stage - I am not sure whether the psychologist, herslef blind from birth, talked about this -, but congenitally disabled people do, for example, when they're in special education surroudned by all disabled peers.
2. Adhering to non-disabled standards while feeling one's disability is a handicap. This is the stage of becomign aware of one's difference, but not accepting it and assuming one shuld really be non-disabled.
3. Putting non-disabled standards into perspective while feeling one's disability is a handicap. This stage is somewhat of an intermediate stage between non-acceptance and adjustment. I think it can be seen as encompassing the reassessmet and reaffirmation stage and the coping stage in Tuttle's model. While in this stage, the person acccepts the use of alternative techniques, for example, but still feels their disability makes them somewhat inferior.
4. Putting non-disabled standards into perspective while not feeling one's disability is a handicap. This involves self-acceptance as a person with a disability, with an awareness of the way in which one is different but while not seing this as making the person inferior.

I do not remember ever having been unaware of my disability, but my parents tell me that, as a preschooler, I was. I was quite a cheerful child back then. When I was still having the DID diagnosis, my parents assumed the trauma causing it was my having had to go into special education and hence becoming aware of my difference. This is somwhat contrary to my rehab psychologist's experience, who shared in her thesis that she was mostly naive towards her difference when attending special education.

Stage two is where I was stuck for years or even decades. I was solidly stuck on this stage when I was in rehab. When my mental health conditions forced me to step back and put non-disbled standards into perspective I slowly slided into stage three, but with a twist of overcompensation. I became insistent on accommodations probably a little more than I could expect. I am still not sure whether my emphasis on my difference as a badge of honor, so to speak, is in itself unhealthy. I do think that its masking a sense of inferiority is.

What I am not sure about, is what putting non-disabled standards into perspective means. Can you overemphasize your difference and alienate yourself from non-disabled people? Or are disabled people naturally alienated from the non-disabled through the idea of non-disabled standards. After all, what I see in this stages model, is that the person with a disability is always seen as deviant rather than equal. They adjust to their disabiliy relative to non-disabled standards. Is this really as it should be? From a social model perspective, can we abandon this non-disabled standards paradigm and replace it with ahumand ignity paradigm? If we can, will this make adjustment easier? I will have to think on this.

Stages of Adjustment to Blindness

Today on the Psych Central blog, I found an article on coping with chronic illness. According to Donna White, the author of the post, people who are facing a chronic illness go through the five stages of grief populated by Elisabeht Kübler-Ross as occurring in bereavement. These stages are denial, anger, bargaining, depression and acceptance. This post inspired me to pull out Dean Tuttle's 1996 book Self-Esteem and Adjusting with Blindness. He describes not five but seven stages of adjustment:

1. Physical or social trauma. This is a situation or circumstance the awareness of which brings about severe anxiety, discomfort and/or turmoil. In blind people, this may be the onset of blindness or vision loss (for those losing their sight later in life), becoming aware of one's blindness (for the congenitally blind), or the knowledge of impending vision loss (for those who know they will lose their sight at some point before actual onset of blindness).
2. Shock and denial. This involves mental numbing, including feelings of detachment or unreality, as well as the cognitions involving denial. Denial can be partial or full.
3. Mourning and withdrawal. This stage happens when people become more aware of the reality of their situation and the psychological defense mechanism of denial decreases. Characteristics of mourning include self-pity and a sense of helplessness. People in this stage often withdraw from their physical or social environment. Hostility may also be part of the mourning phase.
4. Succumbing and depression. This phase involves a gradual awareness of more specific consequences of vision loss. When these (real or perceived) consequences exceed a person's ability to cope, they may fall into depression. The succumbing phase is characterized by negativism and pessimism.
5. Reassessment and reaffirmation. This phase involves the re-evaluation of one's situation. Anger, depression and self-pity begin to recede and people re-examine the meaning of their life, their values and beliefs and habitual patterns of behavior.
6. Coping and mobilization. In this stage, individuals manage the demands of their social and physical environment and direct their energy towards the tasks of everyday life.
7. Self-acceptance and self-esteem. Having a positive self-image is the last stage in adjustment. Accepting one's blindness is a prerequisite for this. However, a positive self-image is far mroe than accepting blindness. It involves the realization that one is a valuable person. This means confronting one's beliefs about oneself and one's blindness, and challenging negative ideas about oneself.

I was unable to see where bargaining fits into the seven-stage model. Bargainign is where I believe I've been stuck for years, although I may confuse bargaining with partial denial.

In 2004 and 2005, when an online friend had sent me Tuttle's book, I had done a series on my old blog on adjustment with my vision loss and actually the reality of finally having become totally blind. I guess in the next few weeks, I will revisit these posts. I realize I'm actually back where I was in 2004, realizing I've become totally blind and (now truly) there is no way this can be fixed.

Autism Treatment and Acceptance Are Not Mutually Exclusive

Oftentimes, there seems to be a dichtomy between those autism advocates who want treatment, and those who want the autistic to be accepted. Usually, parents of people with more severe autistic symptoms and/or intellectual disability want their autistic to be cured, while those autistics with more intellectual and communicative abilities advocate acceptance. This is not always the case, of course, but often it is. Therefore, it is somewhat understandable that autism parents tell autistics that we are not like their child.

What I want to discuss in this post, however, is whether treatment and acceptance are truly mutually exclusive. Of course, a cure that will fundamentally change a perosn's information processing, is contradictory to accepting that processing difference. However, at this point there is no such cure, like genetic engineering or neurological rewiring, which is what it would take to make autism go away entirely.

Do these autism parents who advocate cure, truly want their child's every autism symptom to go away/ I do not know, but it is possible that what they truly want to go away are certain aspects of autism that are debilitating to the child. I do not disagree with this. I, too, take medication to help curb my irritability, for example.

Truly, would you want your child's autism to go away if it made them a very much in their interest invested professor, if a quirky one? It is known that Temple Grandin is autistic, and yet she reached Ph.D. status. If I have to believe her own statements, this is largely due to her special interest and her good ability to empathize with animals. The same likely goes for other "higher-functioning" autistics, but then again these are discredited for disagreeing with the curebies.

Now I get to acceptance. As I wrote in a previous post, accepting the person is different ffrom accepting their every behavior. Hardly any autistic would want themselves or another autistic to be continually aggressive or self-injurious. Also, most parents tht I've met online who advocate treatment for their children's autism, actually love their children to pieces. There are a few who wish their autistic child were taken back by the changelings, so to speak, but these are rare.

So really, is it hypocritical to want treatment for autism if you want to be part of the autistic acceptance movement. While a complete eradication of autism, and thereby autistics, is contrry to acceptance, treatment for the most severe and disabling symptoms, is absolutely not. And this is where views often clash: those with more severely autistic children, want to pretend that treatment will eradicate all autism, and they at the same time pretend that those who disagree, are not autistic at all. Well, fine with me. If you want your child to be like me in terms of functioning, that's okay, but that is not curing them.

ETA: with my sentence about my understanding that parents want their kids to function like me, I didn't mean to place myself above autistics who appear to be "lower-functioning". I realize that's how it comes across. I do want to say that I understand, for example, that parents want their children to have a meaningful way of communicating or have minimal aggressive or self-injurious behavior. I do not feel that any autistic should be forced into neurotypical appearance.

Excusing or Accepting

Many of the people who commented on my previous post, most of them likely unfamiliar with disability rights, commented on a particular part of it: that in which I talked about disabled people being carelessly excused from meeting normal expectations. While it is true that a disabiity in itself should not be a reason to excuse people, in the sense that people think of the disabled as pitifu and therefre to be excused, disability equality goes far beyond equal expectations. Actually, unless a disabled person commits a crime, they are entitled to the same civil rights and inclusion that abled people are. "Normal", that is, non-disabled standards of performance should not be relevant here.

People have a right to acceptance, and, while this means they should be expected to behave in an acceptable manner, what this means is really up for debate. Is an autistic not acceptable because they scream? An effort should of course be made to help the autistic unlearn this behavior, but if they can't, that doesn't make them less acceptable as a person.

We need to make the distinction here between the behavior and the person. All people have some annoying behaviors that are unacceptable to at least a number of others. We can disapprove of this behavior, but we shouldn't be excluding the person for this. Note, please, that my comment about annoying behavior goes for disabled as well as non-disabled people. Once a person has a disability, however, accepting them in spite of inappropriate behavior is often seen as excusing.