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Tom's story

Tom is vulnerable because he puts others first.

My concern is Thomas and others like him. Tom is very anxious to please anyone. He doesn’t grasp the concept of living and dying. When his brother was killed, and my mother in law passed away after that, he couldn’t understand why Charles wasn’t at the funeral. I can see him being pressured to agree to something in order to please others. Also, although he doesn’t understand the meaning of a “burden” there are folks in our group who do understand that, and I would worry about the guilt folks can put upon them to remove that “burden” from the family and caregivers.

I worry about the general public who consistently compare our folks to animals and “putting them out of their suffering.” It’s almost an impossible task to have them realize that people with intellectual disabilities (and many who have physical disabilities) are so vulnerable to suggestions that they would be better off not here as they are not living the life everyone else feels is “normal” or “useful” or are a “drain on society”. This discussion has really taken hold at my work, and the majority of our school bus drivers think it’s a good law and see no reason for any fears I and others might have around our family members or the people we work with. I was a lone voice there the other day.

Quality of life is defined in so many ways when one sits back and takes a look at it, however, the general public and the news media continually consider quality of life based on their standards of being upright, able to walk and talk, able to work at meaningful jobs, able to have families, have a mortgage, two cars, vacations, retirement, etc., etc. Those things are perceived impossible for folks like Tom and therefore they don’t have a right to be here. Hence we sink into the perception of “suffering” and therefore in the name of ‘compassion’ it should be ended.

I know that everyone assures me that the Carter decision only relates to people who meet a certain standard of competence. And people say Tom wouldn’t meet that standard, so I shouldn't worry about him. But we've just seen how quickly the law can be changed, how quickly protections can be removed, when the majority of people believe it's the right thing to do. So who's to say what's around the corner for Tom?

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