Excerpts from "Sticks and Stones: Disabled People’s Stories of Abuse, Defiance and Resilience"
The following excerpts are from Sticks and Stones: Disabled People’s Stories of Abuse, Defiance and Resilience. The complete text includes these stories and others, as well as a complementary teaching guide which offers disabled people, teachers, counselors and family members a range of approaches to teaching and learning about abuse. Order it today!
Forward by the Editor
As a disability advocate and educator, I have repeatedly heard the incomprehensible stories of disabled people describing severe abuse and mistreatment. I witnessed mistreatment by medical staff, of other patients, disabled children more vulnerable than I, in the hospital where I was receiving corrective surgery. I grew up understanding that abuse happens to people with disabilities. But it doesn’t have to. Abuse can be stopped.
A while back, I was among the first with a disability to be admitted to a unique self-defense class for women. “Model Mugging” taught women to defend themselves using physical techniques to repel a mugger or rapist. The program had begun a few years before, designed for able-bodied women. But with increased experience, the instructors realized the techniques could be effective for women with some degree of physical limitation. As a woman with a moderate degree of weakness in my legs from spina bifida, the techniques were readily applicable to me. There was also a blind woman in the class.
The instructors coached us as we practiced the defensive techniques on “muggers,” guys suited up in substantial full-body padding, including hockey-like masks and groin protection, so we could practice our defenses full-out without hurting them. We learned to meet a would-be attacker who might grab our arm or purse strap, with our elbow slamming around to his head. We practiced the shocking skill of stepping up to knee him hard in the groin, slam an open palm to his nose, and poke him in the eye.
We learned that women who shuffle or limp (like me!) were preferred targets. But we could communicate confidence walking on the street in our posture, showing an attitude of, “Don’t mess with me.” We learned safety planning and common sense precautions. We also learned to use our voices as our first line of defense. We were told that, sadly, many women when attacked are silent from years of conditioned passivity in the face of difficulty. We learned to shout, “NO!” in unison, a kind of chant to self-defense. The classes were as exhilarating as they were scary.
This semester, the students in my Intro to Disability Studies class at the University of California, Berkeley, are a particularly compassionate group. When we read about and discussed the rates of abuse of disabled people, along with pervasive disability discrimination, several students keep asking, "How could this happen?! How could disabled people, children or adults, be treated so badly throughout history, and even now, even in the U.S.?"
I, older, a bit jaded in the face of naiveté, want to say, "Hello! Are you not aware of people horribly mistreating each other, daily, throughout the world? Wars, torture, murder? But I soften this point: people, under the duress of the full range of human distresses, can be and are, brutal. But my students retort: “But why disabled people? How could people mistreat someone vulnerable? Someone who couldn't even hurt someone else?”
I review for them the history we’ve studied. The Eugenics Movement in the late 1800’s was just one example in history where people with disabilities were specifically targeted with programs of mistreatment, extreme segregation, systematic sterilization and murder. The Nazi holocaust began with the extermination of disabled people, as “training” for the “final solution.” But long before modern history, people with disabilities were treated badly, though with variance from culture to culture. Evidence of disabled infants left to die of exposure, “mercy” killings of disabled adults, and outright thoughtless murder of those with disabilities is scattered throughout historical record. Those early days still haunt our societies and influence our mistreatment of people with disabilities.
I offer students my private theory. Perhaps the earliest examples of human beings harming their own kind was directed at disabled people. Back in cave days, when small tribes of peoples struggled to survive on our not-so-hospitable planet, even before rival groups fought over territory or scare resources, a tribe member's significant disability—resulting from a wild animal attack or fall causing a severe injury, or a baby born with a mysterious condition, or an unexplained illness, must have been terrifying, unmanageable, burdensome to the group’s survival. These must have been quickly subject to superstitious explanation: evil spirits, punishment from hostile gods. The clan retaliated quickly against these frightening and invisible forces.
But there is good news from paleontology about prehistoric compassion and mutual assistance. Despite scarce survival resources, food, shelter, warmth, there is evidence that disabled people were helped and supported by others. Skeletons of people with previously healed stumps from missing limbs have been found, implying that they got significant help from others to enable the survival.
This book offers stories of people with disabilities who generously and boldly tell of abuse, of defying mistreatment, of resilience in going on to live strong lives. Our intention in this telling is to end abuse and violence against disabled people. We are determined in our mission, yet the barriers, and statistics are overwhelming. We are unwilling to be patient. Our own and our friends’ lives are at stake.
Sometimes when I am leaving work after a day of training or grant writing for domestic violence prevention, or in the aftermath of hearing yet another wrenching story of abuse, I think of my self-defense class, walking with my limp through a parking lot, and I remember to hold my head up high, and think, “NO!”
Falling Down on the Job
I’ve been using attendants for about fifteen years. They help me with getting out of bed, bathed, dressed and ready for meals. Another attendant comes at 11pm to help me go back to bed. I pay my attendants pretty well, supplementing the money they get from Federal and State programs. I have roommates who are not officially attendants but who help me out in a pinch. There are more pinches than you might think.
I needed a substitute attendant. My regular attendant, Tensin, was traveling to Tibet for three months. I don’t enjoy the process of hiring new attendants; many who apply are far from what I am looking for. One call sparked my interest, from someone called Cholong, who described himself as Tibetan. Because of my positive experiences with Tibetan attendants I called him immediately. When he came for an interview, I was puzzled. He was a large Caucasian man, who also called himself Charlie. Cholong was his “Tibetan” name. A spiritual thing, I guessed. Charlie seemed nice enough—a pretty good prospect. He had had some experience doing this work, and described his interests including traveling in Nepal and studying meditation.
We planned a training day with Tensin, standard operating procedure: the experienced attendants help me train the newcomers. But a few days before the training day, I had a question for Charlie and couldn’t reach him. Of course, as all attendant users know, this is not uncommon: the good prospect who vanishes like the early morning dew.
I started calling again for other interviews, but then Charlie called back to say he’d been camping, out of reach of phones. I sensed something fishy but I was desperate enough that I ignored the feeling. Ignore these feelings at your peril, fellow attendant-users. Come the training day, Tensin showed him the routine, while I described what I needed. Charlie hung in there, but didn’t seem to be remembering much of the routine. I figured he’d learn eventually.
After a few days of Charlie working on his own, I was still having to coach him constantly, I started thinking he wasn’t working out. He couldn’t seem to retain anything. He’d disclosed to me that he was diabetic and on some medications for that. Charlie sometimes shuffled or even staggered a bit. I started wondering, “Is he drinking?” He didn’t smell like liquor. Drugs? I wanted him to work out, so I kept giving him the benefit of the doubt.
The fifth morning of his working for me Charlie came into my room. I was in bed. Charlie’s speech was not slurred exactly but just a couple of revolutions slower than usual. He steadied himself by reaching for the windowsill. I thought, once again “Damn, is this guy drunk?” Sam my roommate was still home, getting ready to leave for work. I called him into my room when Charlie was in the kitchen.
“See if you can tell if this guy is loaded.” I asked. Sam gave me a sympathetic roll of the eyes. “Just a wee nip to steady me-self, what?” He made up some pretense to chat with Charlie for a few minutes, then came back.
“I think he might be,” Sam said. Sam is mostly an abstainer, though. “You have a lot more experience with the drink than I do,” Sam said with feigned admiration. “But he’s talking pretty goofy.”
Charlie came back in the room. Sam said he had to get going pretty soon, but indicated with unsubtle sign language that he wouldn’t leave until my situation was clarified.
Charlie shuffled into the bathroom, while I lay there, cranking up my blood pressure. “Now, what the hell am I going to do?” Many times, I’ve lain abed thinking this very thought, alone, and the attendant late and later and probably not coming and definitely not coming. And me hapless and forsaken, like the poet’s turtle gasping in the dusty rubble of the highway.
Charlie was in the bathroom a long time, maybe five minutes. I usually get a wash-up in bed, using a basin with hot water. My attendant brings the basin in and sets it next to the bed.
Charlie finally returned with, not the basin, but the commode bucket, filled with water. He said proudly, “This is hot! good and hot! How’s it look?” While Charlie stood by awaiting praise. I looked into the commode bucket.. I continued looking into the commode bucket as if I could see the temperature of the water. The commode bucket?! Why was I looking at water in the commode bucket?
I felt my jaw clench and an inaudible growl come to my throat. I said “Charlie, I’ve seen a lot of people drunk, been there myself. You look like you’re drunk.”
Charlie crossed his arms, and swayed, made a purse of his lips, a comic version of serious. He said, “I don’t drink.” He turned back to the bathroom, knocking his shoulder on the door jam, splashing water out of the bucket and almost falling down.
Sam came back into the room, and we exchanged glances. Charlie returned. He said, “I have a small drinking problem. I’m not proud of it.”
I felt relief. The truth was out. I said, “I’m glad you told me. Being honest is the first step. But you can’t work for me. You’re fired.” Charlie said nothing. I said, “Okay, you can go now, Charlie” He stood there, head bobbing.
Sam said, “Come on man, you need to go.”
“What about my check?” Charlie asked, belligerently. I said we’d deal with that later, that he had to go right now. He finally shuffled out.
What would I have done if Sam wasn’t there to get me out of bed? I should have grasped Charlie’s drunkenness earlier. How could I be so clueless? I gave him too much slack. These thoughts lingered in my mind, as I called in another ad to the local paper:
Disabled Man seeks experienced attendant.
I was born in Mississippi in the 1960s. My disabilities were caused by lack of oxygen to my brain. My mother was advised to lock me away in an institution, but she kept me at home instead. My brother was born in 1967, and we moved to Louisiana in 1968.
I grew up knowing I was different. Other kids teased me and called me names like “retard.” The first time I felt hurt and left out was in the fifth grade. The other fourth and fifth graders played together in gym class, while I was put in the second grade gym class. One day, a famous football player visited the fourth and fifth grade P.E. class. All the kids got his autograph except for me because I was with the second graders playing Duck Duck Goose. Mom called the school to tell them it wasn’t fair, but I was only reprimanded by the school for complaining too much.
In the 1980s, my mom was pregnant again and my dad was out of town a lot. I was forced to stay at home to watch my mom in case of emergency. Sometimes I got bored and left to play with my friends. Once, I returned late. My dad was mad that I left my mother alone. Later that night, I awoke to him yelling and beating me with a horsewhip. My mom didn’t know that my father abused me.
When I was in ninth grade, I experienced abuse outside the home. I thought I had befriended a group of high school girls, but it turned out that they had other motives. They brought me to their houses when no adults were home and made me take off my pants and touched my private parts. They threatened that I would “get it” at school if I told anyone. I was used by them for an entire year; I was too scared to tell anyone. All I could think about was my Dad’s horsewhip.
My mom delivered her baby, but something went wrong during the birth; she had a major stroke and died. My dad became even more distant. He never asked me if I wanted to talk about her death or offered me counseling. I was depressed and began using Nyquil and alcohol to ease the pain.
Dad got remarried in 1985. Everyone went to wedding except for me; he told me to stay home and watch the house. When my high school prom came around, I wanted to go but was not allowed. When I graduated, my neighbors had a big party for me even though my dad and step-mom were against it. They put me in a group home after graduation. No one took the time to explain to me that I had other choices.
My life changed when I became a local leader of the National Self Advocacy group. At first, I thought the group wasn’t for me, until I found out it was all about empowerment! My goal is to be the voice for people who have not been heard and to empower them. Many families, like mine, don’t believe their disabled family member has a voice or mind of their own.
I like getting to know people, to shake their hands and listen to their dreams. I became the president of a local self-advocacy group, and then a statewide organization in Oklahoma. I started to become well-known. I began volunteering with The Arc of Tulsa – another advocacy group. There, I was the first volunteer with any kind of disability. Eventually, I also got a paying job at a clothing store. A year later, I moved from my group home to my own place. The only person in my family who helped me move was my brother, Joe.
Looking back over my 16 years of leadership experience, I am proud that I have helped disabled people. I just have two regrets: that my real mom hasn’t been able to see what I have accomplished over the years; and that my dad and the rest of my family never said they were proud of me. I want to see people with disabilities become empowered and realize that they have a voice. Children with disabilities especially need to know that they too can have dreams and goals. They should be encouraged to never give up and to follow their own path.
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Just Like a Regular Person
Born prematurely at four pounds, nine ounces, I faced many challenges during my childhood. I had problems with my vision, I couldn’t walk, and I was diagnosed with cerebral palsy. My parents left me alone most of the time, taking my three sisters with them. When we moved from Idaho to Texas, they kept me inside all the time because they were embarrassed to be seen with me: a blind, disabled girl. My parents left me in the bedroom with the television on, and some cookies or cheese on a red plate and a Coke next to me; I couldn’t go on the bus with them because I was “too heavy.” No one outside of my family knew that I lived there until my sister’s friend told her mother, who then called the police. The police came over to our house to get me. My father was arrested for abusing me and not taking me to school. I can remember him saying, “She couldn’t ever read, so what is the use sending her to school?” My mother was not arrested because she didn’t agree with how my father treated me, but he hit her when she tried to take me outdoors. My father did not go to prison, but I wish he had.
My parents got divorced and I was removed from their care by Social Services. I don’t know if my mother ever wanted to know what happened to me. I miss my mother and big sister Darla. She used to read me stories and teach me spelling and numbers. She was a good soul. I wish I knew how to find Darla, but her name is not in the phone books I’ve tried. Maybe she got married and took a new name. I hope she didn’t have a baby that was premature like me, but if she did, I know she would treat it well.
I went to live in a group home for the disabled when I was fifteen. That was the first time I had a friend besides my big sister. My friend was Lacie Jill – what a nice name. We had a lot of laughs together. We were roommates with four other girls, all of whom were disabled. It was a shock for me to live there in the beginning because, unlike the other residents my age, I didn’t know how to use a wheelchair. Lacie had another kind of disability in her spine and was in a wheelchair like me. She moved away, but we talk on the phone sometimes and send Christmas cards.
I got four surgeries on my eyes but none of them helped. Now I can read books on tape, and I finally got my G.E.D. I am now fifty-seven and Darla is sixty-one, if she is still with us and not in heaven. Maybe she will read this someday and find out I am still alive and will come visit me.
It took me a long time to believe that it is not my fault I was born premature and couldn’t see or walk. I was lucky to meet people with many kinds of disabilities and to talk with them over the years. We took classes and went to the movies and had many great talks to help us move past our abuse and shame. Our house-mom told us that no one deserves to be left out of the main stream of life, especially disabled people; I couldn’t help but think of wheelchairs in boats! But seriously, I remember thinking that I’m just like a regular person, except I use a wheelchair and have someone read my books to me. I have all the feelings and thoughts that anyone else has. My father’s mean way did not keep me from living my life.
Danger: Disabled Woman with AIDS
Peter Bodo Ong’aro
I used to be “double disadvantaged,”
First as a woman, second as one with mobility limitations.
Men viewed me as a safe target.
All roads led towards me for free sex.
Then AIDS’ scourge emerged.
Their ignorant thoughts of me:
“She does not move much.
Slim chance of getting AIDS.”
Now I am triple disadvantaged.
Now I have AIDS.
Now I am the endangered species.
And now we are both in danger.
My appeal is for you, as well as for me:
Do not take advantage.
Do not assume your stereotype will save you.
I am no longer “safe” for your misguided pleasure.
Will your knowing the danger of AIDS protect me from your abuse?
I identify myself as an Indigenous deaf woman. I am an advocate for women with disabilities in my community, especially deaf women, and I help them to access services so they can find out about their health and legal rights. I am able to be an advocate because I have had personal involvement with the legal system. I know what it's like to be disregarded and disrespected by the legal system because I am Indigenous, deaf and living in a same-sex relationship.
My experience of the legal system stems from five years of trying to protect myself from being victimized and harassed. This man had eight breaches of an Intervention Order. The stalking laws had only just been introduced at that time, but these didn't help me.
I’d had enough of being a victim in my own home and community. I refused to accept that my freedom to go into public places and visit friends was being dictated by someone else. The reason for the stalking isn't the issue; the issue is why it took me five years and eight Intervention Orders to have this man brought to justice. Why didn't I get the respect of being heard? I took a stand. I provided not only written documentation but also video evidence of the stalking and harassment, but I was told that I had invaded this man's privacy. Where was my privacy?
The police and courts started to believe me when the other victims came to my help. This man had other court cases for stalking at the same time, yet the police still didn't see it as being a problem. Why didn't they believe me before then?
The police made assumptions that since other members of my family had prior involvement with the police and courts (and being more ‘indigenous’ looking then me) that I was the same ‘type of person’. The views of the senior police caused me to question what was real. They tried to tell me that I was ‘imagining’ the abuse, and that I should count myself 'lucky' that this man was 'interested in me'.
When I persisted, I was interviewed, but without an interpreter. I wasn't sure of the language that they used. I was told my request for an interpreter was too ‘expensive’ and time consuming. They told me that my speech was great and they would slow down for me. They said that my hearing loss wasn't a concern for them. I explained to them that while I can speak and lip-read well, I needed an interpreter to give me the full context of the questions that they were asking me. I felt intimidated by their use of the English language and found it harder when they used unfamiliar terminology.
I have had court cases postponed and moved for all sorts of reasons, including not having an interpreter. The perpetrator said he felt 'intimidated' by the use of sign language and said 'we were talking in codes' and that the 'interpreter was telling lies'. Even one of the magistrates didn't understand the bi-cultural bi-lingual (Deaf/Indigenous, English/Auslan) way in which I presented myself and said I looked down and not at him directly (which in my culture is a sign of respect).
Also, every time I had to give evidence I had to re-live the harassment and abuse caused by the stalking nightmare. Where was my right to a fair court hearing? Where was my right to support and to use my own language as a woman who needed protection?
But now I have learnt a valuable lesson about the system: it's not perfect (and it would be unrealistic to think it is). But I have identified the gaps in the system. Regardless of whether the woman has a disability or a language concern, or even if they are the perpetrator or the victim, they should be dealt with appropriately and professionally.
I am not saying that women with a disability should get 'special treatment'. What we do seek is to have just, fair and appropriate support services, a clear understanding of the law and an awareness of who are the key players in the court process and who will eventually provide us with protection.
I am a woman who has survived horrible abuse and harassment, a woman who has a disability and who has navigated her way through the system and survived. I hope I can empower other women to succeed and achieve anything that they want if they truly believe in themselves. And regardless of race, disability, religion and sexual orientation, we are all women first. Together we can support each other to overcome such segregation within our communities.
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