Over the years, many able-bodied people have told me that what they'd fear most about having a disability like mine would be depending upon other people.
For some, a loss of their independence would be worse than death.
When I listen deeply to these folks, it often seems that what they are really trying to share with me is their fear of being vulnerable and dependent upon people who will take advantage of them physically.
When I had my stroke and became paralyzed, I was 18. My boyfriend was 19. We'd been dating since I was 15. Our young relationship was intense. He was a strong personality and I was just learning I had a voice. We had our share of arguments. He wanted to control my choice of clothing and makeup, the car radio stations, my college courses, finances and my friends. Our disagreements were verbally abusive. They never got physical.
Then I had my stroke and began using a wheelchair.
Neither of us had the skills or experience to deal with the tremendous changes and challenges to our relationship. He'd never been so close to such loss. I couldn't do things the way I use to. Even the simplest tasks like getting dressed took more time.
When he was fearful and frustrated, he could be mean. He'd put my wheelchair where I couldn't reach it. He withheld medications and simple assistance. Several times, he threatened to burn my lower body with a cigar to see if I really couldn't feel it. I often wondered if I told anyone what was happening, if they'd believe me.
In public, he appeared as the dutiful caregiver. Others regularly remarked that he was my rescuer. I suspected that people would find his behavior so reprehensible that they wouldn't believe it. Privately, he told me I should be grateful that he wanted to be with me. Frequently, I thought I should remain quiet and give him time to adjust to my disability. I was very afraid and co-dependent.
Finally, I saw a way to end our relationship. Once we weren't a couple, we seemed to get along better. A woman friend from high school became my roommate and helper. One day while I was alone, my ex-boyfriend got into my apartment and began trashing the place. He threatened to hit me. I locked myself in another room and called my dad. He came right over and got my ex-boyfriend to leave. He also had a long talk with me about the statistics showing women with disabilities had a higher rate of assault and abuse than able-bodied women.
In exchange for continuing to live on my own, he asked me to learn self-defense, have multiple helpers so no one person would have so much control over my life and to report my ex-boyfriend to the authorities. I did all of it. I also got educated about the issues and went on in my career to help others in abusive relationships.
Fast forward to several summers ago. My husband and I went tent camping in the U.P. After the first few nights, I felt a bit sick. When I returned home and took that longed-for first shower, my leg swelled to twice its size. My husband rushed me to the emergency room.
In the ER, the medical staff put us in separate rooms and questioned us as to what had happened. Though it was a bit startling at first, we soon realized that the medical staff was assessing whether my husband had deliberately injured me. Our answers to their questions were the same. X-rays revealed that I'd broken my leg in three places just by scooting it under me in the tent. My bones weren't as strong as I'd thought. Because of my paralysis, I couldn't feel the pain.
I had to wear a hard cast from my toes to the top of my hip. After a tough night at the emergency room, we both came to appreciate that the staff had known to assess a person with a disability for assault.
At a young age, I learned what it feels like to be physically vulnerable. I still know it. I will also learn more about this vulnerability as I age.
But that's not all I know. I have lots of strategies to deal with being and feeling physically and emotionally vulnerable. I know that no one else has the right to make me feel small. I don't have to minimize, disguise or apologize for my needs.
None of us do.
Hall of Fame: Crime Victims with Disabilities Community Team. This local multidisciplinary community team includes the Women's Resource Center, Traverse Bay Area Children's Advocate Center, Disability Network, Northern Lakes Community Mental Health, Autism Resource Network of Northwestern MI, Aging & Disability Resource Center/Area Agency on Aging — Elder Abuse Coalition and other community agencies. Call 941-1210 or www.wrcnm.org.
Susan Odgers, a resident of Traverse City for the past 25 years, has used a wheelchair for 36 years. She is a faculty member at Northwestern Michigan College and Grand Valley State University. She can be reached via the Record-Eagle.