Sunday, September 13, 2009


I had a brief conversation with the cousin who disagreed so vehemently last night, and he apologized. I do forgive him, because at heart he is a good person who has struggled mightily with his own health. His sister has actually made great pains to engage me in the comment section, but I've deleted those comments because they are long and my replies even longer. I think that discussion would be best served by another means of communication. Her worry is that he is being portrayed as a "monster." While I disagree with her interpretation, I certainly don't want this blog to be a conduit for hurt and shaming. I did feel it was important to post the exchange we had because it underscores just how difficult this debate is and how huge the divide is, how ill-informed even  relatives might be of the lack of proper healthcare and access to it for the disabled.

I can't pretend to know much about economics or even the fine print of the healthcare bill. But I'm certain that the conflict is not really all about the healthcare bill. It's about profound differences in how citizens perceive the role of government. I'm not sure it will ever be resolved, and I only feel fortunate that we live in a country where we are free to disagree, free to say what we want without fear of being killed or thrown into jail. What I am certain of, though, because I do know firsthand what it's all about is that yesterday's march in Washington made a mockery of what good people are trying to do in this country for the healthcare of children and people with disabilities. And when my own relatives support it, that just makes me plain sad.


  1. Wow, Elizabeth, you continue to amaze me with how you manage to remain incredibly articulate, authentic, and still compassionate in even the most heart-wrenchingly difficult situations. You are a role model for all of us...and I say that with a grateful heart, not laced with pressure to continue to lead the way.

  2. Elizabeth, you are a far better, more compassionate and loving person than I will ever be. And we won't even talk about strength.

  3. It's hard when family doesn't agree with each other.

    I'm glad you were able to make amends.

  4. Elizabeth, check out George McGivern's article in Washington Post ...:It's Simple, Medicaid For all "

    Moira Canada

  5. How exhausting this whole dialogue must be, for all of you who are involved. It makes me sad. And I say that as one who has experienced many disagreements within my own extended family.

    One thing seems clear to me about conservatives, moderates and liberals: we all want the best for those we love and care about. There is frequent disagreement about what that means, and how it is to be achieved, but I believe we do want the best, and we do love.

  6. It's taken me some time to process the series of posts you have written here about members of your family. Most of my relatives are liberal/moderate, so I'm not subject to the same sorts of political discussions that you're dealing with. But, over time, Robert's disabilities have been used as a wedge by members of my extended family as well--just not over healthcare.

    What I find is that, for some members of my extended family, Robert's disabilities and our struggles make them feel uncomfortable. They feel guilty. And then if we manage to slight them in some way or give any appearance of being too needy, we usually get some kind of backlash that allows said family members to alleviate their discomfort and continue to distance us.

    My husband's primary family, for example, has, for years, been developing complicated excuses as to why it's OK to exclude us from family events, whether they are in California (where some of them live) or in the DC area (where one of them is). The bottom line is that they want to have family get-together where they don't have to have "stress" about including Robert. Recently, they've taken to wanting my daughter to join them (without me, my husband, or Robert)--and have attempted to make me feel bad if I have some resistance to this. I.e., I'm not thinking of her, or I'm being too possessive, or I "have to realize that E. will be able to do much more than Robert all her life." Or, why can't Roger and I get someone to sit with Robert while we all have a nice weekend together?

    And when it comes to financial dealings, well--we've been beat up and called bad people there, too. And that's complicated, believe me.

    The conclusion I keep coming to is that a lot of people, including people/relatives close to you, want their empathy and/or help to come with a recognition on your part of the power differential: you are weak, they are strong. You need charity, and if you would only recognize your natural inferiority, you might be able to get some.

    And this is why a government role in all of this would be helpful: help wouldn't come with those kinds of emotional strings attached.

  7. Jeneva I hope you are speaking soley of your family and not making broad generalizations of other families feelings or what you percieve to be guilt. That is certainly not the case with my family. We have disabilities throughout our family, adults and children. Our offers of help, love and finance come stricly from the heart, a deep love of family and a deep seeded need to help when you see someone suffering. Maybe our family is different from yours. It is sad that your family behaves the way you describe but try not to lump everyone into that catagory. Anyone that offers help stricly for power,out of guilt or a need to be reconized is someone to be pitied for they are not much of a human being at all...are they?

  8. Thanks for all the comments and, as always, the support.

    Anonymous: There's a function on my blog where one can request that no anonymous comments can be made. I've chosen not to use it and subsequently have noticed that it really bothers me when people don't say whom they are. It usually happens when someone disagrees, often vehemently. I don't think jeneva, at any place, was speaking for anyone other than herself. Sadly, though, those of us in the disability world know of many, many, many similar circumstances that are described. In a nutshell, I wish that anonymous people would stand by their convictions by identifying themselves.

    Maybe this could be a post in and of itself?



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