Poz Mikey

7/19/2006

An Interview With Jeanne White-Ginder (The Full Interview)







I found out I had the opportunity of interviewing Mrs. Jeanne White-Ginder the mother of Ryan White, the brave young man who put a human face to HIV/AIDS virus. Ryan was a middle class, hetrosexual boy who brought attention to the fact .that anyone can get HIV/AIDS, not just gay people or I.V. drug users.

This is what I knew about Ryan and Jeanne White-Ginder before the interview: That Ryan was infected by a blood transfusion. He and his family sued Ryan's school district for his right to attend school. Ryan was an activist for people living with HIV/AIDS and gained celebrity status in the 1980's through his activism. He testified in front of a congressional committee which led to the Ryan White (CARE) Act. CARE stands for "Comprehensive AIDS Resources Emergency."Jeanne White-Ginder stood by her son during his ordeal and his fight to stay alive living with the HIV/AIDS virus.

Waking up blurried eyed at 5:30 am in the morning, making a very strong pot of coffee and making sure my notes were together, I waited in anticipation for Jeanne White-Ginder to call. At 6:00 am my phone rang and I had one of the most amazing experiences of my life. Jeanne is an amazing, down to earth woman with the heart of gold, like a saint, with a sense of humor. I love Mrs. White-Ginder more now then I did before the interview. She graciously answered 15 questions for me in a phone interview and put me at ease within the first 30 seconds.

Mikey: Do you feel like Americans have become to complacent about HIV/AIDS?

Jeanne White-Ginder: Yes I feel that Americans have become complacent about HIV/AIDS. With the drug therapy in this country, I feel that Americans have the attitude that it is a disease which everyone can live with on a daily basis. I feel that education, earlier treatment, and detection are key factors in this country.

Mikey: How did your fellow employees at General Motors treat you when they found out Ryan was HIV positive?

Jeanne White-Ginder: They would leave spiteful, hateful notes on my computer, under the glass on my desk, and on my time card. They really didn't understand what HIV/AIDS was at that time. I stayed working there because I needed the insurance money so Ryan could get treatment, but eventually I took an early "Buy Out" and retirement plan. When Ryan was diagnosed I was praying it was something else and not HIV/AIDS.

Mikey: I couldn't find out in my research where Hubert (Ryan's father's) worked and how he was treated after Ryan's diagnosis?

Jeanne White-Ginder: Hubert and I were divorced before Ryan found out he was positive. He worked for General Motors till he retired. Though he paid child support he wanted very little to do with Ryan. Hubert died about a month after he retired from General Motors.

Mikey: How is Andrea (Ryan's sister) doing these days and is she active in HIV/AIDS awareness?

Jeanne White-Ginder: Andrea is living in Florida about 15 minutes from me. She worked in the department of child services and didn't like seeing the judges giving back children to drug users and child abusers. Andrea is now teaching 6th grade in Florida and mentions Ryan once in awhile to me. Andrea felt that AIDS ruled our lives for the 5 1/2 years while Ryan lived with the virus. Andrea doesn't like dealing with the media very much but will tell people she is Ryan's sister.

Mikey: Did Andrea feel pushed aside while Ryan was getting all the attention from the virus ?

Jeanne White-Ginder: Andrea was famous in her own right being an accomplished Roller Skater. She competed in about 6 different events. She had many friends in the roller skating world. Many here in the states and world wide. Due to finances, Andrea had to give it up skating for a while. Her coaches then gave her free lessons and her pairs partner and friends used to give her rides to practice. Being a mother I tried to give both children equal amount of attention. It was hard sometimes from us traveling so much.

Mikey: The Kokomo Tribune first printed Ryan's story March 3, 1985, who leaked it to the press?

Jeanne White-Ginder: Since Ryan's disease had to be reported to the CDC, they were able to put two and two together since Ryan was in the hospital . His teachers came to visit Ryan in the hospital right before Christmas. They brought flowers, gifts and cards when they came to see Ryan. They were asked to put on surgical gowns and mask. This was for Ryan's safety not theirs. They didn't go into see Ryan not understanding the HIV/AIDS virus. They were more of a threat to him then Ryan was to them. I thought they would know more about the virus then I did at that time.

Mikey: Do you feel too much attention is being placed on Africa with their problems with HIV/AIDS?

Jeanne White-Ginder: No, not really. Due to high tariffs importing the HIV/AIDS meds and not being able to receive them. Along with lack of education, doctors, government attitudes, and funding. I really don't think the world will get a handle on the AIDS epidemic in Africa. I believe that they are where we were 20 years ago, at square one. No scratch that, they are at minus square one. The rest of the world could learn a lot from the U.S. on how to treat people living with AIDS.

Mikey: Since Ryan knew Greg Louganis, did he tell you he was positive before releasing it to the general public?

Jeanne White-Ginder: I suspected Greg was positive. I didn't know for sure until he released his book. When he appeared on Oprah I was there to surprise him and give him support.

Mikey: Have you ever spoken at the World AIDS Conference?

Jeanne White-Ginder: No, the lack of funding has kept me from attending. I believe it is in Canada this year and I am hoping to attend. Contrary to popular belief, we never became rich from Ryan's activism for AIDS funding and research.

Mikey: Do you still have that guardian angel you kept by Ryan's bed?

Jeanne White-Ginder: Yes, I keep it by the scrapbook I have of Ryan's life. The wiring is a little bad so I have to jiggle the wire now to get it to light up.

Mikey: Do you feel that Ryan's legacy has been forgotten?

Jeanne White-Ginder: The older survivors now living with HIV/AIDS and the people who lived during that time period still remember Ryan. But the younger generation now a days don't even know Ryan's name. There is no one young, or old who is a role model for someone living with HIV/AIDS.

Mikey: Do you still keep in touch with Sir Elton John and Michael Jackson?

Jeanne White-Ginder: Michael called me this year to wish me a happy mother's day. With all the bad press Michael has received in this country, most people forget that he has a very gentle, kind, giving soul. As for Elton I have talked to him very little over the past couple years. He has been spending a lot of time in England with his partner. Andrea and I still get very decorative Christmas cards from him every year. When Elton visited Ryan, he always included Andrea in what he and Ryan were doing. He also brought her gifts like HardRock Cafe jackets from London and what not.

Mikey: Since First Lady Barbara Bush attended Ryan's funeral, how do you think her son's administration is handling the HIV/AIDS epidemic?

Jeanne White-Ginder: I will not bad mouth president Bush or his administration. President Bush right now has a lot on his plate. Funding and benefits are being cut everywhere to help support the war on terrorism

Mikey: I know you do public speaking about Ryan and his fight for AIDS benefits and research. What are you doing now a days?

Jeanne White-Ginder: I am on the AIDS Commission Board in Washington D.C. I also speak at benefits, colleges, and high schools. I hope to be working with Elton in a few months with his foundation.

Mikey: If you could tell the world one thing about HIV/AIDS what would it be?

Jeanne White-Ginder: Like cancer there is no cure for HIV/AIDS. This epidemic is only going to get worse until there is a cure. People all around the world are still dying from the HIV/AIDS virus.

Mikey: The Gay Guru(link on sidebar) and I want to thank you very much for taking time out of your schedule and doing this interview.

Here is what I learned researching information for the interview and talking to Mrs. White-Ginder; That Ryan contracted the virus while having part of a lung removed. Not only did the hospital give Ryan his Factor 8 (for clotting blood) treatments for his hemphillia, Jeanne White-Ginder used to give him his treatments at home. When Ryan was first diagnosed with the HIV/AIDS virus his CD 4 count (T-cells) were at 25. After Ryan's death, Mrs. White-Ginder wasn't sure if she could continue Ryan's work. Senator Ted Kennedy convinced her to testify in front of 23 congressmen which led to her ongoing fight for HIV/AIDS funding. Jeanne White-Ginder still believes their is still a (homphobic) stigma around people living with HIV/AIDS. As I knew, she stated in our interview that HIV/AIDS is a nondiscriminatory disease that infects anyone of any race and any age.

On a personal note I would like to say a few things. Over the years HIV/AIDS has, and is still destroying lives in this country and around the world. Living on a very low income, in a HIV/AIDS support house and having full-blown AIDS when first diagnosed (now undectectable.), I receive benefits from the Ryan White (CARE) Act. I can not thank you, Ryan and Jeanne, enough for your work dealing with HIV/AIDS virus. Through you and your son's work, you have saved and given me a chance to rebuild my life.

Jeanne White-Ginder in the past was public speaking 3 to 4 times a week. Mrs. White-Ginder is only speaking 2 to 3 times a month now about her and Ryan's cause fighting for people living with HIV/AIDS.If you like to learn more about Jeanne White-Ginder and Ryan you can visit http://ryanwhite.com/. There you will find Jeanne's and Ryan's stories. Both of their congressional testomonies, the timeline of Ryan's life, and Ryan's legacy. Should you like to contact Mrs. Jeanne White-Ginder to speak at your fund raiser, event, school, or interview her she can be contacted at Jwhiteginder@aol.com.

13 Comments:

  • i am still jealous as all getout.

    By Blogger Jules, At 6:19 PM  

  • This was a very necessary and powerful interview to share with us. Ryan White was a hero of mine when I was a kid and to hear from his mother so many years later has made my day. Incredibly informative and honest...excellent job!!

    And to Jeanne, the love and support you showed to Ryan and Andrea throughout the years is inspirational. Your family's story has affected so many lives. I will never forget Ryan and the work he did even at a young age.

    THANK YOU to both of you.

    By Blogger Joe, At 6:58 AM  

  • Terrific interview! Thank you for doing this and sharing it with us...

    Oh, and WELCOME BACK!! :)

    By Blogger sue, At 8:12 AM  

  • You have control of your blog again! Woo hoo!

    Great interview, Mikey. Powerful stuff.

    By Blogger Karl, At 2:55 PM  

  • Wow, that is really very moving. Glad to see Ryan still mentioned and remembered.

    His mother was and is so strong! My God!

    By Blogger WAT, At 11:51 PM  

  • Bravo Mikey! Great Job....Very Interesting and informative.....Continue doing what you do.....you grow and mature in your Blogging skills with each post, and this was a winner!

    By Blogger A Voice For My Random Thoughts, At 6:47 AM  

  • those are great questions you asked. what a powerful opportunity. :)

    my favorite part was when she said that elton john sends "very decorative Christmas cards." that tickles me.

    By Blogger Sizzle, At 1:13 AM  

  • welcome back mikey. What a great interview - a fantastic way to make your return :)

    By Blogger suze, At 6:18 AM  

  • I have always admired Ryan White. His book "My own story" made me cry, and I've been looking for a way to contact his mother jeanne thru email just to tell her hw much their story touched me. i always wondered what happened to andrea, and cant find her in any searches. This interview with jeanne was fantastic, and I'd be very grateful if you could give me a contact address thru which i cud write to jeanne.

    By Anonymous Anonymous, At 8:29 AM  

  • Thank you for your help to those people who wants to know more about what happened to Mrs. Jeanne white-Ginder after Ryan died. The book Weeding out the tears that wrote by Ms. Jeanne White with Susan Dworkin really made me emotional. I never knew what happenned to her sister Andrea after Ryan passed away.

    By Anonymous Anonymous, At 11:38 PM  

  • I am a grandmother and I remember a handsome young man Ryan who always seem so intelligent and positive. God shared him with the world for 18 years. But most of all he was Jeannes little boy. He was a mothers baby. Its hard to face each day with uncertainty. My son was 31 when diagnoised with pancreatic cancer and luckily a blockage formed where the bileduct and other organs come together which caused his liver to back up and eyes turn yellow. It was caught in time. No cancer in other organs. The doctors did the 13 hour wipple surgery to insure his life. It has caused problems since they basically rewired him. he lives with my husband and me now. He will be 37 Nov. 30th. His spleen was forcing blood into a damaged vein to hard causing longated vein and leakage causing him to almost bleed to death a few weeks ago. so now hes up for getting a thing put in his spleen to kill it out. I dread this but it has to be done. If it doesnt work he faces a surgery worse than the wipple thats never been done before. He like Ryan is the sweetest young man. He wont even try dating thinking no one would want someone in his condition. SOmetimes I have to rub his back to releive his stomach pain after using the bathroom. because of dumping syndrom. I havent lost a child. I can identify with the uncertainty though. I wish and pray for better health coverage and care for our families. my son and we have had to fight to get care he needed to this point. Now one of the medicenes he uses isnt made anymore because it isnt sold enough. It is a constant battle for him. I just wanted to tell my story from a mother to a mother. And I could see Ryan on T.V. brightening other peoples lives when he was the one who was ill. He was a help to so many. thank you for allowing me this time here..Sandy

    By Anonymous Sandy, At 1:43 PM  

  • Hi Poz Mikey, how blesses we are to have had Ryan White on the same earth with us how couldn't this be a better place I was so touched by his story after losing one of my best friends which I stayed by his side until the end, not like his family who scattered like roaches!I'm a song writer who has included a reference to Ryan White R.I.P. in a song/video I wrote Titled "They're Apart Of The Human Race" In Which Ryan's picture is included in the video with lyrics about him the video can be seen on you tube under the song's title also at myspace.com/tinamariesoriginalsongs
    please pass the video on to Ms. Jeanne White Ginder Tell Her I Said Thanks For Giving The World The Gift Of Loving Rayan!

    By Blogger beskepsecretout, At 1:23 PM  

  • I know this is an old article, but you got it wrong. Ryan didn't contract AIDS from the lung biopsy. It was the biopsy that confirmed the form of pneumonia and confirmed the AIDS diagnosis.

    By Anonymous Anonymous, At 11:43 PM  

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