Disabilities, Pity and Compassion

Two weeks after I was diagnosed with a severe speech disability in 1999 I received my first treatment for it. I was in a state of wonderment, marveling how lucky I was to have found the missing piece of the biggest puzzle in my life. Having a name for the strange condition I lived with for the past forty years was new for me, as was the miraculous prospect of being able to speak if I responded successfully to treatments.

My doctors explained that it could take years to learn how to speak correctly and sound somewhat normal, but I must respond to the treatments for this to happen. They also said that, if the treatment succeeded, I would have a very breathy voice. I went to my first treatment knowing all of this, hoping that I would sound breathy, but also better.

Ever since my voice problem began as a young girl, I hated the sound of my voice. It was broken and I couldn’t speak at a single pitch. When I tried to talk it uncontrollably went up and down in register, accompanied by a staccato-like quality that was rough and cracked.

I often got very frustrated with my speech problem, but was rarely depressed about it. Yet, even after learning the truth about my condition and responding successfully to my first treatment, I became depressed. I hated the sound of my voice even more. The treatment produced a whispery, almost frog-like timbre. My doctors said it would smooth out, gain volume and sound more normal over time, but – as a woman — I thought it sounded masculine and harsh.

Even though I had the hope of speaking normally one day, I couldn’t get past the external effect of my treatment. I wallowed in self-pity and this went on for weeks. Then one evening, sitting in the dark with the TV on, a program came on about Siamese twins. It was about two sisters and all of the everyday challenges they faced. I found myself in awe of how they went about their lives, doing what they had to do, even though these women had to deal with such an extreme hardship. A part of me was totally inspired, but another part of me felt ashamed of myself for thinking, “It looks like they have it harder than me.” I was shocked when I realized this about myself, but it woke me up. Once I saw how my thought process was going, I vowed that I would never again give into that feeling of pity for myself or anyone else.

Over time, I became involved with many disabled people. Through school, work and personal situations, I made friends and acquaintances who were Deaf, or bound to wheelchairs, or who had lost their voice due to the same condition as mine. At times I found myself about to pity someone but then I would catch myself, focus on that person’s strengths and capabilities, and turn what could have been pity into compassion. That shift helped me to see everyone, including myself, in a completely different light.

As the years passed I was very lucky to get ongoing treatments that enabled me to speak almost normally most of the time. I no longer hated the sound of my voice but actually began praying for the return of that frog-like voice after a procedure.

Still, I experienced lots of people asking me about my voice after treatments. Some people were very caring and it was easy to discuss my situation with them, but others were not. In fact, one day shortly after a successful treatment, a colleague was shocked by the sound of my voice when I said “Good morning.” She asked if I was sick. When I explained what my croaking sound was due to, she responded, “Oh no, that’s awful!” And the look of horror on her face didn’t make me feel much better. Her reaction made me feel defensive, as if something was wrong with me. I felt like I had to explain myself so I assured her that sounding the way I did was a good thing, but she didn’t seem to get it. Her lack of understanding made me feel pitied and it put me off, making me feel distant from her. This is what pity does.

So many experiences like this have made me think about the difference between pity and compassion, and how, in particular, it affects relationships between those who are able-bodied and those who are not. If you’re not used to being around disabled people, perhaps you have a notion that they are sick or helpless. These kinds of ideas play on people’s sympathy but often give the wrong message – that anyone who is disabled is unable to function or contribute to society. I believe that pity comes from a place where people, even those who are well meaning, are uncomfortable or scared by what they see so they can’t empathize with the other person. Compassion, on the other hand, seems to be the exact opposite.

A shining case-in-point is Helen Keller. If we look at her story we can see how pity and compassion play out. As a blind and deaf mute, Helen Keller’s family pitied her and practically gave up on her. I think Helen’s family lost sight of the spark in her, but her teacher, Anne Sullivan, saw it. While her family allowed Helen to become something of a wild child, Anne Sullivan struggled compassionately with Helen so that she would learn language and develop as a human being. This enabled Helen to become an accomplished author, political activist and lecturer. Helen Keller even co-founded the ACLU, American Civil Liberties Union, which serves as an advocate for human rights.

Many people don’t seem to know how to be compassionate with others who have challenges they know nothing about. But I believe we can all learn. Perhaps learning how to be compassionate is learning how to support others. Surely, one can selflessly share in another’s struggle, but I think the act of compassion can be simple too. It can be a caring touch, or a warm hug that makes someone feel better. Over the past few years I’ve tried to be more compassionate by simply smiling more when I see people. It might be for the briefest moment, but sometimes a warm smile or the smallest act of compassion will give someone what they need. Who knows? It might even make their day.