Rusty was a heroic fighter for the cause of children disabled at birth.
Texas has long been a human rights challenge. The rallying cry of “keep families together” has been active there since 1994, when mothers and nurses were boldly active, and finally got a concession from the Governor George Bush.
In the 1990s, when children were born with catastrophic health conditions, Texas families were suffering more and had reduced options in relation to other states. Texas, aligned with nursing home industry, said that severely afflicted children had to be institutionalized if they were to get state assistance. This government stance was perceived by many not to be in the best interest of the child or the families.
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The heroic fighter was born in Austin with extreme health maladies but had a sharp mind and joyful personality. He had the good fortune of being born into a family and extended family that was directly involved in delivering public health – most were mothers.
Rusty had a loving home life, wrought with challenges and difficulties – it would have been difficult even without the added burden of taking on the state – but they did. Team Rusty resisted and organized.
Along the way Team Rusty learned about politics and worked to shed light and to get others to see the possibilities. It was pointed out that each situation is unique and yes, some families must sometimes resort to institutionalization. But when families have the capability and make the commitment, children should have the option of being with their families without giving up state support.
Nurses and other advocates had buttons made up saying “Kids Belong in Families”, but they were discouraged from wearing them in their public workplaces.
Rusty the Heroic Fighter in Action
When a nursing home representative in front of the legislature referred to the subject children as “vegetables”, Rusty took his turn and was able to communicate this to be untrue. Rusty triggered changes in public school methods when he was literally bored to tears, prompting them to teach him more.
It was a long arduous fight, and in the end Team Rusty won only a fraction of the children’s rights they had sought – but win they did. Governor Bush was personable, and though he did give a little, it was not without relentless pressure.
Today, certain states can still be perceived as a laggards on such human rights issues. It’s no surprise that Trump and the GOP can rely on Texas to do their bidding against immigrants at the border. Thinking feeling people cannot help but ask – if you say the child has a right to life, why abandon or barter them at every step through their lives?