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7-6-90
Lizabeth [redacted] [redacted] [redacted] In. [redacted]
Dear Ms. White:
Please read the enclosed commentary, written for a Women's Study Class I was taking at the time of Ryan's death. Although the paper was written for a class, and is -- among other things -- a perspective on how our culture binds women into impossible mothering roles, it is also a token of support to you.
I, too, am a single parent with a son and a daughter. My daughter has cerebral palsy which has created life threatening situation on several occasions, and has also left her vulnerable to bigotry and bias. My son has been graced with an athletic body.
How difficult it sometimes is to help them see that each struggle brings its own blessing -- that even though [redacted] has been dealt a body that isn't what we would like it to be, she has also been given many gifts. And [redacted], who appears to have the world by the tail, has struggles and problems as great as any adolescent child.
I understand much of what you have battled. And now, as you are facing the grieving process of Ryan's separation from you through death, I want especially to offer my support and encouragement to you. You have been an inspiration to many, through your faith, spirit, and creative determination. Please be comforted by those of us you have touched.
Sincerely, Beth [redacted] Beth [redacted]
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COMMENTARY #8 [redacted] BETH [redacted]
Mothering
Jeanne White has been criticized for some choices she has made as a mother. She has been accused of being a stage mother, pushing her son toward center stage, exploiting his illness for her own gain. She has also been accused of losing sight of her son's personal needs in their fight to gain public acceptance of his infection with AIDS, accused of sacrificing the private care and nurturing she should have provided her chronically ill son, for the political and business tactics needed to wage courtroom battles.
No one but Jeanne White will ever know all the demons she has wrestled, or how she has come to make the difficult decisions placed before her. I will not pretend to know her heart. But, as a mother who has faced some significant struggles of my own, I'd like to project some theories about her motivation.
Long before Ryan White was diagnosed as having AIDS in 1985 at the age of 13, his mother had known the pressures, grief, and guilt of mothering a chronically ill child. Hemophilia, although controllable, is a life threatening illness. Any
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bruise, any minor scrape or cut could be fatal. If Ryan's mother had not been vigilante and skilled at administering the blood factor Ryan's blood lacked and needed for clotting, he could have bled to death many times -- from injuries for which most children would not even need a band-aid.
Double binds are everywhere. Jeanne, although she must encourage Ryan toward safe and careful behavior (and be prepared to administer immediate first aid should he err.) must also try to somehow provide this child with a normal life. As a good mother, she must allow him to experience activities and make increasingly independent decisions, knowing his risks only too well. Now factor into these opposing pressures another child, a healthy, younger daughter with her own needs for being mothered.
Aside from these complex family dynamics (in which Jeanne White was the sole adult) remember this: hemophilia is an hereditary disease passed from a mother (who carries the gene, but is healthy) to her son -- who will have the disease. Guilt.
Guilt. Her experience with guilt did not make Jeanne White a beaten or bitter women. Instead, she learned compassion and acceptance -- and she learned to direct her anger at things
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that can be change. Perhaps her compassion of the human condition is on reason she and her family could battle the ignorance and prejudice of public opinion without becoming bitter or vicious. When someone expressed to Jeanne their hatred and anger toward the anonymous donor who provided the contaminated blood that infected Ryan, she said, "Then you might as well hate me. I am the one who pumped it into his arm. And I'm the one who gave him hemophilia."
My point here is that when Jeanne White was told that her son had AIDS, she had already experienced and survived more than most parents endure in a lifetime. Grief, guilt, dilemma, and impossible responsibility were already old friends. So if most parents could not understand how Jeanne could be so cool and strong, how she could appear so accepting, it is because the did not understand the fires that had tempered her strength, not because she was, in fact, unfeeling.
Ryan White became a public figure. He wanted to go to school and have as normal a life as possible. To do so he had to fight fear and stigma in the courts and on the streets. To fight that battle, he had to sacrifice his privacy. From all accounts I have read, at every stage of advancing the social battle, Ryan was ultimately the decision-maker.
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Here the double-bind of Jeanne White is most distinct. How tempting it must have been to say, "No, Ryan. I want to hold you, shelter you, guard our time left together. Don't take on another battle for us. Hasn't life been cruel enough already?" Ryan's risk for infection from his fellow students if he were allowed back into school could hasten his death dramatically.
On the other hand how she must have ached to change to climate that was stigmatizing and punishing her son who had already been victimized enough. He wanted to go to school. Here was a young adolescent who might never reach adulthood, who, in the midst of a fatal illness and public derision, was struggling for independence. In making this decision that he clearly felt strongly about, could she have felt anything but proud? Could she do anything but support him with all her resources?
Besides, here perhaps was a battle they could win. All the anger and the terrifying helplessness (which mothers of healthy children can only begin to imagine) could be focused on and directed into this battle. Jeanne White could not cure her son of hemophilia. She could do even less to help him fight AIDS. At least in the battle for social