Disability and Self Worth

In a society that often defines self-worth in terms of function and productivity, how is self-worth maintained when these are diminished or lost?

This question first began milling around in my head when I first started working with the disabled and crystallized when I met Alan.

When I first met Alan, he was hunched over in a wheelchair, his limbs contorted into painful shapes. He had no use of his limbs and could not feed himself nor scratch a painful itch. His voice was barely audible and I often had to strain to hear him. For the first six months, I repeatedly heard three words from him; I want to die." What could I say? The only reply I could come up with was "I don't blame you." I didn't realize how far this would go. He knew I couldn't fix him and neither he nor I were looking for this. However, he needed to be understood.

Over the next six months, I learned more and more about him. He was once a tall, handsome, and extremely successful man. He had several advanced degrees and was a wealthy businessman. He was also an accomplished musician and athlete.

From the perspective of most, he was someone who had it all and then lost it; his marriage, his home, his business, and contact with his children. He felt helpless and useless and the institution in which he was placed did not help with this self-concept.

I became more and more curious over time. I did not see a gnarled figure hunched over in a wheelchair; I saw a vibrant man full of inner depth and beauty. There was a true self longing to be heard and understood.

I Became angry with the institution which would ask questions such as "what measurable behavioral changes am I making with him? I would angrily reply "what do you expect him to do, get up and do an Irish jig?" This did not make me terribly popular which is why I am now in private practice. My retort to that comment was "what about finding some meaning and worth in his life? What about having the will to live? What about just staying alive? He looked forward to our meetings and so did I. He gave me something quite valuable which is to see the intrinsic beauty and worth in a person who can no longer do anything for themselves.

As a blind person, I fully understand the feelings of helplessness and worthlessness that can happen; the feeling of being perpetually in a waiting mode. In his case, waiting for someone to feed him, dress him, etc. In my case as a blind person, it can mean waiting for someone to read something to me or drive me somewhere. It can feel as though life stands still at times. But inside, so much is happening. Another blind woman with other disabilities once described her inner state as being a "quiet riot." I love this expression.