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SARAH'S SCRIBBLINGS

July 15, 2004
1:50 a.m.

blindness and abuse

This is something I wrote in response to a presentation on blindness and abuse in relationships. The text of the presentation is online at http://www.cnib.ca/eng/national/wbu/wbu_fifth_assembly/speeches/women_face_abuse.htm.

I have a difficult time emotionally with the word "abuse." To me, it implies that the person has an intention to harm. This is reflected in most written definitions of use--the definitions often use words like "systematic" or "calculated." A few years ago, I was discussing some problems I was having with my mom: feeling trapped and incapable, constantly modifying my goals and/or interests to suit other people's expectations, fear of being criticized or ridiculed for my thoughts and feelings, etc. Mom said, "Do you realize that you've just described a person who has been abused?" That was one night when we had a candid discussion about the fact that abuse happenedin my home when I was a child. None of it was intentional, but that doesn't make it less painful or change the effect that it has on my life. To give it a crude explanation, whether my arm is broken because I fell out of a tree or because someone beat me intentionally, my arm is still broken and that's what I have to live with. So the need to find a better definition for abuse is something that blocks me from moving on in my healing and in my discussions.

I think that most abuse is done in ignorance. That statement is something I've only begun to understand recently. How can people not realize what they're doing? I think it's not so much that they don't realize but that they only think of certain aspects of it. They think of the need to control or change something about the other person or the situation, and they do what comes to mind. I think that most people who "abuse" don't sit down and decide to abuse--most will cry out against abuse in other situations. But what we call abuse is simply a habit of doing something that is harmful to another person but that achieves--or seems to achieve--some positive result. Maybe it makes the "abuser" feel good, or maybe it "keeps the peace," or maybe it gets something done that needs to be done, or maybe it communicates something that could better be communicated using words--but the person doesn't know how to put the feelings or needs in words. I understand now why Jesus prayed, "Father, forgive them, for they do not know what they are doing." When a person is distressed, he/she tends to develop "a one-track mind," and it becomes easy to ignore signs of the other person's distress. This allows the abusive behavior to escallate, and the only solution thatcan prevent the pattern from repeating itself is addressing the need for effective skills for coping with the situations that set it in motion. Ibelieve that most people truly do feel remorse about what they've done, but many do not seek the kind of help that would stop the cycle. Their shame is too great.

"Why is abuse so prevalent among disabled women?"

This is a loaded question with a lot of answers. We could probably write volumes on it and barely scratch the surface. Abuse happens for a number of reasons, and I really don't think it is possible to point to a small number of things as causes and then move on to finding a solution. Solutions haveto be found and applied on a case by case basis.

There are instances where abuse is obviously "the abuser's problem." A person can't cope with a child's expression of pent-up energy and so disciplines the child much too harshly or in ways that no sane person would ever dream of using. We call this abuse because it's cruel and harmful to the child. The abuser calls it effective because it gives the illusion of solving the problem. The annoying behavior stops, and that's all theabuser's one-track mind cares about unless and until he/she has a reason to want or appreciate that kind of behavior or notice the child withdrawing from people, etc.

What I call "relationship abuse" gets much more tangled. Obviously at least one of the people involved has poor "coping skills." He may get set off bysomething the other person can't control (like a disability-related need) or by anything else. The other person, however, also has a need to control or change the situation and may have ineffective "coping skills" of her own.(I'll use male and female here, but I want to make it clear that females are not the only people experiencing abuse.) She may become passive and try to make the best of the situation. She may fight it, and in fighting it she may also begin to engage in abusive behavior. Or she may get out. Getting out depends on not only her physical abilities and resources but also her attitude about herself and her potential to get out successfully.

In the case of blindness, we are often not as helpless as we might think we are. Attitude is our greatest enemy in many cases, and that is my answer to the next question: "What are some of the factors that make it so difficult for disabled women, and blind women in particular, to get out of abusive situations?" My experience is not representative of all experiences, but I think it is representative of many--and not just women. Men obviously often have power over women; but women also have power over men in many ways that we fail to recognize. A sighted woman can have a lot of power over a blind man. In fact, another blind woman can have a lot of power over a blind man in many instances. I don't have the kind of personal experience to back thisup that a blind man would have, but my experience is that blind men often struggle--usually behind emotional concrete walls--with extremely low self-esteem, may doubt their masculinity, and may rely on family members for caregiving in areas where they lack self-care skills. This gives the spouse or family member an incredible amount of control whether they want it or not, and people with "caretaker" personalities can sometimes be abusive without realizing it. One of the types of abuse that most often affects blind people is lack of information and education in areas of self-care.

There are many kinds of abuse. One of the most enlightening books I ever read is called "No Visible Wounds." It talks about various kinds of nonphysical abuse. I was very comfortable at the time talking about thingslike sexual abuse, physical abuse, etc. I generally said that these weren't major issues for me because the instances were I had been sexually andphysically abused were few and far between. But nonphysical abuse was very evident in my life, and it hurt to be confronted about it through what I was reading. It's also humbling now to realize that my definitions of physical and sexual abuse need revising and that I am more affected by these things than I thought.

Neglect. This can be manifested by denial of food, lack of or inappropriate personal or medical care, lack of assistance with grooming or meal preparation.

I would add to this that neglect can and often does include lack of instruction in self-care skills; and failure to define neglect in this manner is very tragic for a blind person. It's very easy for a caretaker (be they parent or spouse or sibling or ...) to believe that she is not neglectful because she is providing everything physically that the blind person needs. This is a very dangerous mindset because it paves the way for other abuses. This kind of caretaking and neglect combination eventually breeds resentment because the blind person often becomes passive and emotionally dependent on physical care even though she is capable of caring for herself if only she knows how. But even learning how is a hugeundertaking because it requires her to attack very inaccurate beliefs about herself that have become ingrained. "I can't," is her mantra, and nothing but achievement can convince her that she can. But achievement also depends on believing that she can--unless she finds a "teacher" who can combine a good kick in the pants with enough nurturing to help her take the risk of trying something she "knows" she "can't" do.

This is a very basic problem that occurs in a lot of homes, and I see the teens and young adults paying a very high price for it. I had some basic self-care skills when I went away to college, but I learned them late--in a sort of crash course style after high school graduation. Somehow, I had enough rebellion in me that I was able to confront my parents about the problem. Their solution to seeing that I was entering adulthood without self-care skills was to propose that I attend a rehabilitation center for "college prep." I knew better--I didn't need "college prep" anymore than my sighted peers did. I needed basic skills that my sister learned when she was ten, and I felt an incredible amount of shame about it. The last thing I wanted to do was go away to spend my entire summer learning things I should have learned when I was ten. I refused to go and said to my parents' "We don't know how to teach you," "Well, you better figure out how." I still hada lot of shame, but I was very glad that I could learn these things in the privacy of my own home. This set a very very positive pattern for me. I knew that I could learn skills at home with the help of whoever I felt comfortable learning from. I learned how to ask for information I needed instead of being spoon-fed, and I think this prevented some other problems from occurring later.

Medical neglect is a hard one for me to swallow, and it's something I can easily become very angry about because I had a significant condition that was written off as "stress" for 17 years when it could have been treated. I could go off on all kinds of tangents about medical neglect where my migraines are concerned--neglect that came from my parents, from staff at the school for the blind, from my ex-husband, and from doctors... I tend to remember the neglect in my marriage most, and it was most significant because it led to additional types of neglect. K didn't understand that my muscle weakness was a legitimate disabling condition. So when I had difficulty with meal preparation, he assumed it was a psychological problem, that I was just being lazy or needed to "get over" whatever I was feeling emotional about. Because I had an undiagnosed medical condition (medical neglect), I interpreted his opinions as truth instead of as the medical and physical neglect that they were. Maybe I just should suck it up. Maybe I'm not really hungry. Maybe I'll feel stronger soon and then I can fix my own food (but lack of food also increases weakness). Maybe this really is all in my mind and I should stop inconveniencing people by asking to go to the doctor. Neglect breeds fear of neglect, and I responded to that fear by acting as if I would be neglected--by minimizing my own needs or even doing without so that I wouldn't be neglected. This is just self-neglect, and self-abuse is the worst kind of abuse.

Psychological abuse. This can include verbal abuse, intimidation, social isolation, emotional deprivation, denial of the right to make personal decisions, threat of having her children taken away. In addition, refusal to provide transportation to appointments, refusal to read personal mail.

Many of these things happen as a "normal" part of a blind child's life. There is a fierce conflict (especially inside the blind person's mind in response to the mixed messages) between the "push" for the blind child to become independent and the implication that sighted people often "know best," and in any area of life a sighted person's "opinion" may actually be "fact"--or at least a more accurate understanding. A blind person who enters a marriage or other long-term relationship with the habit of deferring to another person's judgment opens a door (unintentionally) for "abuse" which may or may not be intentional--and a spouse who gets in the habit of having control by default may resort to intentional abuse when that control is threatened once the blind person begins to try to develop his own control over his life. This is a common dynamic in the homes of abused women in general. It is magnified in the homes of blind women who are passive; and it is especially harmful when blind men are the ones who are in the passive role of "being cared for."

Psychological abuse was a big problem in my marriage. He withheld information from me, planned a move that would isolate me from family and friends, told me he wished that my SSI would stop so that I would not take it for granted,mocked my displays of emotional pain, withheld affection from me when I was emotionally vulnerable... I probably don't need to go on. These were eventually things that made me see that I needed to get out of the situation. If I hadn't had parents who recognized the signs that I was being torn down emotionally, I probably would not have left. I tend to think that emotional/psychological abuse is the most significant contributing factor in why a person will stay in an abusive situation. I think so because of the number of people I have known who would not leave even when all the physical obstacles to leaving were removed.

Sexual abuse. This includes denial of a woman's sexuality, denial of sexual information/education about such things as birth control or childbirth, verbal harassment, unwanted sexual touching, assault, forced abortion or sterilization

"Sexual abuse" is really what got me started on my healing journey. My marriage was littered with sexual difficulties, and this was a common topic of both civil conversation and argument. It frustrated both of us, particularly because I couldn't just "get over" my difficulties. I couldn't make sex less painful. I couldn't stop feeling unclean after every sexual act. And I couldn't stop feeling like these things indicated that something was very wrong with me. I had had these problems in my previous engagement (to someone named James, who I chose not to marry because he ridiculed and pressured me openly about sexual things). I knew that what James did to me was sexually abusive even though I had no physical injuries or scars. I knew that some things other people did to me during my teens were sexually abusive. I have a hard time acknowledging that my parents' failure to give me accurate information about sex and sexuality was abusive. My mom was very uncomfortable with the topic of sexuality, and she probably was not educated about it herself. She probably assumed I would figure it out naturally when the time came, and her efforts went to educating me about the importance of abstinence until marriage. I took this very much to heart--and along with abstaining from sex I also abstained from anything that might lead to it. The problem was that I didn't know my own anatomy, and I didn't know a man's anatomy--and I wasn't curious because I had never allowed myself to be. In fact, I was repulsed by the very thought of having contact with any person's "private parts"--mine or anyone else's. Kids who had sex or talked about sexuality (especially in slang) were "dirty," and I felt dirty even though Iwas married and sex was supposed to be a beautiful, God-designed part of marriage!

I have healed from a lot of these things now--I have a healthy appreciation for physical/sexual intimacy and have allowed myself to become familiar with male and female anatomy. Years after my divorce, I finally had an experience that opened the door for that healing. If I had been treated in my marriage the way I was treated in the later encounter, I might have had a lasting marriage. The sexual abuse and neglect of my childhood was the catalyst for my sexual problems in marriage, but the emotional abuse and neglect in my marriage aggravated those problems and created a viscious cycle of inability to connect sexually and need for emotional connection which was not forthcoming.

Financial exploitation. A woman might be denied access to and control over her own money or assets, her financial resources might be misused orfinancial information might be misrepresented to her.

This was also a problem in my marriage, and a rather interesting one at that. I was married to someone who did not want to work a traditional job. I was a career-minded girl, in school taking more than a full-time load and bringing in SSI. We both had a lot of debt--and ironically we used my student loans to pay it. I never realized how much ongoing debt he was creating until later. But to aggravate the issue, I found out later that he knew there was such a thing as a do-it-yourself divorce; he had seen it while we were out shopping one day, but he never told me until I mentioned spending $1000 on attorney fees. He knew that I wanted the divorce, but he felt that giving me the information would be the same as condoning the divorce. So he simply ignored it because he knew I would never know about it. It still angers me to realize how easily he took advantage of me to enforce his own wishes.

Getting out... I touched on this earlier, and I want to get back to it now. Attitude was for me the most significant barrier to getting out. For one thing, I needed to believe that I had the skills and resources to care for myself. If the blind person is unemployed and socially isolated, getting outis a major task. She can't just go and get a temporary job, work at a restaurant, etc. I've been looking for work for six years. I can't imagine trying to get out of a bad situation without help--and I am thankful that I did have family who were willing and able to help unless I had money.

But even more paralyzing is the feeling of obligation that many people with disabilities have toward any person who is "significant" in their lives. If you are in a position of authority, I "owe" you respect--I must do as you want me to do because to do otherwise is to disrespect you. If you are a family member, I "owe" you my "love"--and if I leave you because you abused me, I am not loving you or being "considerate" of you. And if I am religious... Well, I haven't discussed "religious abuse" in this post. I'll discuss my thoughts on that separately. I'll just say that the words, "God hates divorce," can be used very abusively; and because we had been active in a Pentecostal church, he also entertained the possibility that maybe the reason I wanted a divorce was that I was "demon possessed." I eventually healed from that, too; but it wasn't easy. "Getting out" not only meant getting out of the physical situation. It also meant setting boundaries so that the emotional and spiritual abuse wasn't allowed to continue from afar--and when those boundaries were broken, it meant cutting off contact with him for a while. Doing these things was a million times harder thanlearning self-care skills, but the same principles applied. I needed to believe that I had the right and the ability to set those boundaries, but only setting those boundaries would help me to begin to believe that I had the right and the ability. It's a viscious circle, and sometimes I have to break out of it again and again.

I think the biggest problem that blind people have with abuse is a limit on the ability to ensure privacy and safety. Fear of being watched, followed, or approached is very strong sometimes. Since my divorce in 1998, K has been in the habit of telling me he's going to come and surprise me with a visit. Fortunately, he so far has not. He may not realize why that is frightening to me, and he probably doesn't mean it to come across as a threat. But it *IS* frightening bacause I can't determine when I am being watched or followed from a distance. There have been a number of instances in my life when I thought I had privacy and learned later that I did not. So it can feel very much like I have no control and could be violated at any time. That tends to create a hypervigillant mindset for me, and that's not a pleasant state of mind to be in.

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