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  • A Conversation with Jeanne White Ginder

A Conversation with Jeanne White Ginder

Thursday, June 03, 2021

Jeanne White-Ginder

Jeanne White Ginder, special assistant to the RCAP senior director, was recently interviewed for the Indiana University "A Conversation With…" campaign that addresses mental health issues, substance use disorder, stigma and other health issues. This student-led program was created by IU professors and acclaimed actress and mental health advocate Glenn Close. In her presentation, Jeanne discusses the stigma her son and family faced when Ryan was diagnosed with AIDS in 1984 from taking treatment for his hemophilia.

A Conversation with Jeanne White-Ginder

Description of the video:

My name is Jeanne White-Ginder, and I'm the  mother of Ryan White. Ryan was born with  
00:09
severe hemophilia, and he took a medicine called  Factor VIII. Little did we know that the drug that  
00:15
we thought was saving my son's life, it ended up  being the drug that took their life because later  
00:21
we learned it contained the HIV virus. They took  a two-inch biopsy, and the results came back  
00:27
that he had AIDS. And sure enough, in 1985, they  started bringing in all hemophiliacs to clinics,  
00:33
and almost 80 percent of them was all HIV  infected. We thought we had all these medical  
00:38
experts. We had the CDC, the NIH, we had  all these famous infectious disease doctors  
00:44
who supported Ryan. But local doctors testified  that they wouldn't let their kids go to school  
00:49
with Ryan, and they wouldn't treat Ryan if he'd  been a patient of theirs. So the medical community  
00:54
was in such a disarray because they didn't know  about AIDS. You know, they were confused about  
01:01
how AIDS might be transmitted. When he  finally won the right to go back to school,  
01:04
there was all these things that he had a  separate restroom, he had to eat off disposable  
01:10
eating utensils and trays. And he was telling them  they don't, "You don't have to be afraid of me,  
01:15
you can't get AIDS from me,” and how you get  AIDS and all that. I’d go to the grocery store.  
01:20
See, people would take my money, but in giving  me my change, they would like be so obvious that  
01:26
they didn't want to touch me. We had trash dumped  in our yard. It was, it was just, it was really,  
01:30
really cruel. We had a bullet hole shot through  our window. He said, "When you don't know about  
01:34
something, you're going to be afraid of it.  That's why we have to continue to educate people."  
01:39
When the rumors were flying that we were moving  into the neighborhood in Cicero, the first day,  
01:44
five kids stopped by the house to introduce  themselves to Ryan, because Jill Stewart,  
01:48
who lived three doors down, Jill went to school  and said, “Let's make Ryan White welcome here.”  
01:54
Kids need to be able to know that they can make a  difference in other people's lives. You can either  
01:59
take the bad road or get the facts and then spread  those facts. He accomplished something through the  
02:06
Ryan White Care Act, I mean, he was able to do  that. I mean, he didn't get the meds and the  
02:11
treatment, but because of him, other people are  getting their meds and treatment and able to live  
02:16
long, productive lives. I think with Ryan, he  wanted to look forward to what he can do tomorrow  
02:22
or what he could do a year from now. I mean, he  never stopped thinking, “Well, I'm going to go  
02:26
to IU.” You have to have dreams and you have  to have a will I think to try to get to those  
02:32
dreams. You can't ever give up, and I think that's  what Ryan's philosophy would be: never give up.
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