Quality of Life and the Disabled

When I was growing up I heard people talk about quality of life (QOL) versus quantity. As a little girl this didn’t make much sense to me, but in time I learned that most of us want our lives to be long, happy and healthy. I never really thought about this much until I lost my ability to speak normally around the age of twelve. Almost immediately, creating a good QOL for myself was all I could think about. Quantity didn’t even matter.

Growing up, my parents were always trying to make ends meet. Their exhaustion and struggles around finances seemed to produce a constant flow of emotional volatility and dysfunction in our family. I often felt like I was walking on eggshells around my parents, so my QOL wasn’t great to begin with. Then, when I could barely communicate and had no diagnosis for my problem, things got worse. When this happened in the 1960s I was so lost and had such little support that my overwhelming concern was how to make each waking moment okay. I had lots of thoughts like, “How can I avoid struggling to speak with someone?” Or, “I hope I won’t fail but I don’t know how I’m going to get through the report I’m supposed to do at school today.”

My young life became so filled with moment-to-moment challenges that I never sat down and thought, “What does quality of life” mean to me? However, my QOL and the lack of a good one made it more obvious every day that all I wanted was a peaceful home life, to not feel anxious, and to have some kind of inner peace.

Once I was out of my parents’ house and living on my own, my biggest concern became money. I didn’t want to merely survive and eke out a living; I wanted to enjoy life. Still, since my speech was so problematic and I was living in an age where everyone used their voice and the telephone to communicate, my job possibilities were limited. I began to equate a good QOL with one’s standard of living so I thought if I could find a decent job where I used my mind but didn’t have to use my voice, maybe I’d have a chance to lead something of “the good life.” But it was hard. I settled for many jobs that I disliked, where I gained little reward financially or otherwise. I budgeted like crazy and watched every cent I made. I was fired from one job due to my speech and the condition of my voice made me feel very insecure at other jobs. There was little stability in my earning power, but I never gave up. I knew I had to keep going.

Of course, I envied people whose lives seemed easier, and I would periodically break down from the frustration of my situation. To compensate, I overindulged in lots of bad behavior and reckless affairs. I hoped all the drugs and rock ‘n’ roll would help me forget my struggles and up my QOL, but nothing changed.

This went on into my thirties, but then things began to shift. I lost some very significant people – friends and family, including my mother. I also put down two of my most beloved pets. After each passing I asked myself the same question. What was the quality of their life? Were they happy? With every answer I asked the same of myself. My life still felt so challenging, but deep down I also felt that I might be what was blocking my way to something better.  

Although I was terrified of honestly facing the blatant truths about my life, I knew I had to. I had to admit that I might never get a diagnosis for my speech condition, that I may never speak well again, and I may never have a good job. Once I faced these hard realities, I felt relieved. I wasn’t even depressed because I suddenly realized that, although my disability placed all kinds of limitations on me, it also forced me to find out who I was on the inside. It pushed me to discover that I was strong and courageous, so I could improve my life condition in spite of whatever obstacles I might have.

It was fascinating to see that once I faced my disability honestly and accepted everything that came with it, there was no longer a need to fight it in any way. I began to feel much healthier on the inside because I finally recognized the best parts of myself, and this gave me a tremendous sense of power and pride. Interestingly, this switch in my perspective seemed to almost effortlessly produce a much more pleasant life on the outside too. Eventually I was diagnosed, given treatments that enable me to speak, and learned sign language to have a job that is fulfilling.

I believe that most people, whether they are disabled or not, think much more about their QOL when they are personally faced with an adversity. I will always wonder if my disability helped me deal with life’s challenges more easily than others, merely because it was forced on me. Perhaps if I didn’t feel so pressed to face my challenges and work creatively around them, I would be a totally different person. I don’t know.

What I do know is that being disabled has played a key role in creating “the good life” I now live. Although money has little part in this, I consider myself to be enormously wealthy. It is a wealth that gives me a happy and peaceful feeling on the inside, and that seems to naturally result in the same on the outside too. Again, I don’t know if I gained this wealth because my disability demanded me to dig deeper to recognize my strengths, but I suspect that many people with disabilities may have acquired such wealth too. However, this wealth certainly isn’t just for the disabled. It is a treasure inside each of us just waiting to be found. All it takes is a little courage and some persistent digging around.