Jump to ratings and reviews
Rate this book

The Life and Death of Ryan White: AIDS and Inequality in America

Rate this book
In the 1980s, as HIV/AIDS ravaged queer communities and communities of color in the United States and beyond, a straight white teenager named Ryan White emerged as the face of the epidemic. Diagnosed with hemophilia at birth, Ryan contracted HIV through contaminated blood products. In 1985, he became a household name after he was barred from attending his Indiana middle school. As Ryan appeared on nightly news broadcasts and graced the covers of popular magazines, he was embraced by music icons and well-known athletes, achieving a curious kind of stardom. Analyzing his struggle and celebrity, Paul M. Renfro's powerful biography grapples with the contested meanings of Ryan's life, death, and afterlives.

As Renfro argues, Ryan's fight to attend school forced the American public to reckon with prevailing misconceptions about the AIDS epidemic. Yet his story also reinforced the hierarchies at the heart of the AIDS crisis. Because the "innocent" Ryan had contracted HIV "through no fault of his own," as many put it, his story was sometimes used to blame presumably "guilty" populations for spreading the virus. Reexamining Ryan's story through this lens, Renfro reveals how the consequences of this stigma continue to pervade policy and cultural understandings of HIV/AIDS today.

284 pages, Kindle Edition

First published October 11, 2024

6 people are currently reading
99 people want to read

About the author

Ratings & Reviews

What do you think?
Rate this book

Friends & Following

Create a free account to discover what your friends think of this book!

Community Reviews

5 stars
10 (22%)
4 stars
15 (33%)
3 stars
17 (37%)
2 stars
2 (4%)
1 star
1 (2%)
Displaying 1 - 20 of 20 reviews
Profile Image for Dessi.
356 reviews51 followers
August 10, 2024
I received this ARC through NetGalley in exchange for an honest review.

Paul M. Renfro traces the chronology of a boy born with hemophilia who contracted HIV through contaminated blood products when he was just 14, and subsequently became the poster boy of HIV/AIDS education.

I picked this book because, earlier this year, I read Richard A. McKay’s “Patient Zero and the Making of the AIDS Epidemic”. This was a pretty good complementary read, offering the flip side of the coin of the narratives that shaped the AIDS crisis in the 80s and beyond.

Renfro argues that, while Ryan’s story was important in challenging early misconceptions about the transmission of HIV, his image as a white, cis, straight, “wholesome” boy also served, on one hand, to establish a hierarchy among AIDS patients: “innocent victims” like Ryan, who contracted the virus “through no fault of his own” (with white children at the top of this pyramid), and “guilty spreaders”, ie, gay men and drug users who not only had their behaviour to thank for the disease, but were also responsible for passing it on to others - like Gaëtan Dugas, aka “Patient Zero”. On the other hand, Ryan’s fight to return to school, his outlook on his condition, which emphasized “normalcy”, and his advocacy for education also shaped a “national pedagogy” that placed responsibility on the individual rather than on systemic issues.

The author also examines the classist prejudices that were present in the national demonization of Kokomo, Ryan’s hometown, during the rise in “colorblind rhetoric” - again, centering the blame on the abhorrent attitudes and actions of a few white bigots and away from the systemic structures in place.

The book goes on to analyse the political climate during the Reagan and Bush administrations; how the narratives around Ryan’s activism shaped the emergency act that provided federal funding for AIDS patients; how his image was used both by opponents and supporters of the act even decades after his death; and the ways in which the act ultimately failed to provide relief for the communities most affected by AIDS.

Finally, as in McKay’s book, the political response to the AIDS epidemic was held up against that of the COVID-19 pandemic, particularly in how both health crisis continue to impact historically excluded communities disproportionally.

This was a very clear and comprehensive book; not being USAmerican, I knew nothing about Ryan White prior to this and I come away with plenty of knowledge and insight about this particular chapter of AIDS history.

My one critique is that the book had quite a bit of repetition in ways that seem to speak more of a lack of editing than to wanting to emphasize a point. Just to name two examples, the line “Ryan White became the most famous PWA in the United States (and perhaps the world)” was repeated almost verbatim, as was the enumeration of Ryan as a “young, white, straight, popular” PWA.

Other than that, I would recommend this book to anyone interested in the topic.
Profile Image for Nev.
1,451 reviews220 followers
October 4, 2024
This book is an interesting look at why Ryan White became the poster boy for the AIDS epidemic in the 80s. Early on the media, politicians, and society at large were content to ignore AIDS or not give it the money, attention, and empathy it deserved because of the groups of people it was impacting most: queer people, intravenous drug users, and people of color. Especially queer people and IV drug users were seen as having brought it upon themselves because of their actions. Ryan White was a straight, white, young kid who was infected through blood products he used because of his hemophilia. So in the eyes of many he was an “innocent” victim who was infected “through no fault of his own.” His fight to be able to attend school like everyone else thrust him into the spotlight. Yes, lots of people learned about AIDS through Ryan’s story, and they had empathy for his situation. But why did they not have that same empathy for the scores of marginalized people who became sick and died before Ryan?

Paul M. Renfro explores how the way Ryan was spoken about in the media, by politicians, and by the general public enforced a hierarchy of people with AIDS with so-called “innocent” victims at the top. The people who got the most attention, like Ryan, were people from groups who weren’t hit the hardest by the epidemic. But they could be seen as politically neutral or “safe” because they weren’t from marginalized groups. Because of the narratives that followed, it made it difficult for attention and funding to get to the places where it could’ve done good for the communities that had the most cases. Like how the Ryan White CARE Act limited the ways that organizations who dealt with intravenous drug users or queer people were able to use the funding.

I do think that this book is best read by people who already have a good understanding of the AIDS crisis overall. The book doesn’t go into too much detail with the background of the beginning of the epidemic or the political, medical, and activist responses before Ryan White. The book is also extremely repetitive with how many times it mentions that a hierarchy of victims was reinforced or that something helped create the national pedagogy around AIDS. Many times it felt like the examples could’ve just spoken for themselves rather than having to repeat the same explanations of the point.

The Life and Death of Ryan White is a very thought provoking read, especially for people who were already familiar with Ryan’s story. It causes readers to examine the ways that Ryan was treated differently than other people with AIDS and why that was the case. Definitely check this out if it sounds interesting to you.

Thank you to the publisher for providing an advance copy via NetGalley in exchange for an honest review.
Profile Image for Melissa.
1,417 reviews95 followers
August 23, 2024
A complimentary copy was provided in exchange for an honest review. And this is my opinion; if you would like to have a healthy and respectful dialogue regarding this subject, I welcome that. And I fully embrace someone who respectfully educates me to see this topic from a perspective I have not thought of. I tried to explain my thoughts as clearly as possible but I don't discount I didn't always articulate it well. Be kind. Now to my review/thoughts.

Profile Image for Jenn the Readaholic.
2,182 reviews72 followers
July 16, 2024
So imagine you knew of the Ryan White docudramas and interviews in the 1980s. And your mother had a book about him in the 1990s. And you lived through the horrific lies and hateful cruelty spread by anti-science “compassionate conservatives” from about 1984 onward. You’d think you’ve got a good grasp on who Ryan White was, what he represented, and how he changed the hearts and minds of a nation, right?

Nope. Wrong. I mean, some of that, absolutely. But he was also a prop. A boy living while knowing he’s dying was used as a wedge in so many ways. He also sort of played up to it because the innocent white boy is the perfect poster child to assuage those who finally admitted that AIDS was a thing because their friend, Mr. Hudson, died. Because we couldn’t possibly humanize anyone else who contracted this disease, could we….

This is an excellent map of how we got from fearful hate to somewhat acceptance to ignorant hate all over again. It’s proof that AIDS is still here. It’s a wake up call to the masses. Politicians messed up and didn’t trust science. People messed up and didn’t listen to logic. And one particularly awful person who continued to evoke Ryan White’s name in his victory laps against epic increases in HIV/AIDS cases under his watch should remind us all that science needs to be at the wheel in times of medical need.

This will infuriate you all over again. It’ll make you sad and mournful. It’ll remind you of the hard work so many hes, shes, and theys did to help others either survive or die with any dignity they could hold. And hopefully, it’ll make you think about how many lives were lost, but also how many remain here today because of those people and the science that kept right on working to try to help the world in a time of need.
Profile Image for Bargain Sleuth Book Reviews.
1,587 reviews19 followers
October 5, 2024
Thanks to the University of North Carolina Press and NetGalley for the complimentary digital copy of this book; I am leaving this review voluntarily.

Ryan White was just two years older than me, so I knew his story well from the mainstream media's coverage of his town's refusal to let him attend classes because he had AIDS.

I am glad that the author is revisiting White's story for a new generation and how people with AIDS were treated in the early years. The thesis of the book is that Ryan White got treated differently because he contracted the disease "through no fault of his own." (This phrase is bludgeoned into us throughout the book) What should be the takeaway from this book is that even among AIDS sufferers, they were treated differently based upon their skin color or sexual orientation and how the Reagan and Bush 41 administrations failed to respond to the crisis. However, the execution of that is hopelessly lost among the repetitive word salad that I read.
Profile Image for Adrian Shanker.
Author 3 books13 followers
February 3, 2025
“As a supposedly innocent person with AIDS, Ryan White occupied a much different position in the hierarchy of respectability. And although this position did not protect Ryan from infection, illness, and eventually death, he secured the sort of dignity, respect, and care that ought to be the norm for people living with HIV and AIDS.”
Profile Image for Elise.
120 reviews
November 4, 2025
The social and political context of Ryan White’s life and death is certainly worth exploring, but this book turned out to be NAUSEATINGLY repetitive. If there were any good points in here, they were lost in the word salad.
Profile Image for Joseph Stieb.
Author 1 book241 followers
June 10, 2025
A fascinating study of Ryan White and larger issues of race, sexuality, identity, and public health. The underlying question of the book is: who gets to count as innocent?

Ryan White was a teenage boy (also a hemophiliac) from Indiana who contracted HIV through a tainted blood transfusion. He lived for about 5 more years and became and international symbol of resilience and humanity. According to the standard narrative, White "humanized" AIDS, showing that "normal" people could get it. The fact that he was innocent, having received the virus after taking no risky behavior, added to this dynamic.

But PR digs deeper than this and asks why it took a straight, white, Midwestern boy to "humanize" AIDS, a disease long thought to be a "gay plague" or something confined to homosexuals, heroin users, sex workers, and certain ethnic minorities like Haitians. When the disease was confined to these groups, much of America either shrugged it off or treated it as a punishment for deviant behavior. When White's story emerged, his innocence garnered massive attention and more resources for AIDS, but at the risk of further stigmatizing the people who "deserved" it. This came to the fore in the CARE Act passed after Ryan's death, which included stigmatizing and punitive restrictions on those who had contracted the disease through unsafe practices.

PR tells this story in a moving and concise book. The book is a blend of history and social critique. If I had a criticism, it would be that the innocence narrative surrounding White might have been more reasonable than PR contends. This is where history and moral judgments merge a bit, but there's a case to be made that unprotected sex (of any kind of sexual orientation/gender identity) and drug use are riskier behaviors; certainly riskier (one would hope) than getting medically necessary blood transfusions. That doesn't mean that anyone deserves AIDS or don't deserve excellent medical care. Nonetheless, PR makes a good case that the focus on personal innocence that surrounded Ryan White pushed attention away from more systemic inequalities in health care.

Anyways, I enjoyed this a lot. PR always comes up with fascinating social history topics to tackle, and I look forward to reading more of his work in the future.
Profile Image for Rachel.
476 reviews12 followers
August 12, 2024
I’m going to just say now that I know I’m being a hater and I feel kind of bad but only a little.

This is possibly the most repetitive book I have ever read in my life. Each section read like separate news articles. Every time there was a section change, it was as if the author thought the reader got amnesia so he repeated every single thing we already know. This is quite a short book but it probably could’ve been cut in half and then some and still gotten the same points across.

I wish the author had expanded more on what was happening with other AIDS patients during the same time of Ryan’s struggles as a juxtaposition instead of just repeating “unlike men who have sex with men and IV drug users” and providing absolutely no additional context. I also wanted at least a timeline of major events in the AIDS crisis (AIDS discovered, test for AIDS created, HIV discovered, first time Reagan publicly said AIDS, antiretrovirals discovered and their FDA approval timeline, etc). There was none of that. The author’s time and my time would’ve been much better used if this book included those things rather than repeating the same facts ad nauseam.

I know Ryan most likely just regurgitated the things his mom thought and said but it was A LOT. The internalized ableism is off the charts. By framing himself as a “perfect innocent victim” of AIDS caused by the promiscuity and drug use of others, he contributed to deeply homophobic and racist ideas that still cause actual harm to this day. He and his mom also spent a lot of time talking about how they just wanted him to be a normal kid at a normal school but when his story hit national news, he spent a very large chunk of time traveling around the country going on news shows and attending galas and events rubbing elbows with very famous people. That is not normal kid behavior and it’s not public school kid behavior. Normal kids aren’t allowed to miss school to go on Good Morning America multiple times. And Elton John and John Cougar Mellencamp weren’t at the bedside and funeral of normal kids. That’s not an attack on Ryan or the support he got, it’s really just a comment on how disingenuous the entire “normal kid” argument was.


Thank you to NetGalley and University of North Carolina Press for the eARC
9 reviews
October 14, 2024
I was a teenager in the 1980s & remember being affected and scared hearing White's story. I remember coverage of his 1990 funeral, which was attended by Elton John, Michael Jackson, and Barbara Bush.

What I was too young to realize at the time was how his life and story were so intricately tied up at the time with partisan politics and with activism for AIDS research and education. Renfro shows how media & politicians used White's story as an "innocent" white midwestern child victim to both expand AIDS awareness and pass important federal funding, AND SIMULTANEOUSLY to deepen anti-gay stigma, ignore the impact of AIDS on communities of color, and ultimately cost more lives.

One thing I appreciate about Renfro's approach is that he keeps Ryan White's experience and voice at the forefront (through his news interviews, and by quoting his and his mother's autobiographies), showing how, even though he was used by various other actors as a symbol, White was also a real teenager who lived and was mature enough to embrace a certain role that he saw he could play during his short lifetime.

The author takes White's story up to the present, with VP Mike Pence (also of Indiana, White's home state) invoking Ryan White during his 2018 World AIDS Day remarks while advancing a Republican political agenda that (still) undermines science, access to health care, and LGBTQ rights more broadly.
Profile Image for Tavia.
293 reviews
October 5, 2024
Paul Renfro examines the life of Ryan White, the poster child for an innocent AIDS victim in the 1980s. White was diagnosed with AIDS stemming from his hemophilia blood treatments. Since White was just a child, and neither gay nor an intravenous drug user, the nation took notice of his plight to attend his school, which he had been expelled from after his diagnosis. The book also highlights the political response to the AIDS crisis and the marginalized populations disproportionately affected by HIV/AIDS.

I wanted to read this book because I remember Ryan White growing up and I wanted to learn more about his fight with AIDS. I learned a lot about him, his community’s reaction to his diagnosis, and HIV/AIDS history in general. The epilogue also goes into Mike Pence and his policies.

Thank you to NetGalley and University of North Carolina Press for an advanced copy of this book.
Profile Image for Christine Cazeneuve.
1,468 reviews42 followers
July 16, 2024
Even if you think you know the story of Ryan White and his impact on the AIDS/HIV virus - you don't! This book is thoroughly researched and broken down into logical chapters. However, if you think that this book merely focuses on Ryan and his life with the disease you will be disappointed. This story is much more than that and as it should be. A very educated read. Thanks to Netgalley, the author and publishers for an advanced copy in exchange for my honest opinion.
Profile Image for Sarah Swedberg.
443 reviews5 followers
February 26, 2025
This is a fantastic history of the 1980s and 1990s AIDS epidemic through the lens of a photogenic "innocent" white teen's experience with the illness. Paul Renfro helps to expose the fault lines that exist in our community and they ways our society uses concepts like innocence and guilt to keep those fault lines firmly in place.
Profile Image for Natalie.
96 reviews
Read
May 14, 2025
Growing up in Indiana, I had heard of Ryan White. I was familiar with the circumstances surrounding his media fame and the publicity his death garnered. What I was less familiar with was the use of Ryan's circumstances in political circles. This book sheds some light on how a life-threatening disease was perceived and how those contradicting perceptions interfered with developing treatment.
77 reviews
Read
May 14, 2025
Growing up in Indiana, I had heard of Ryan White. I was familiar with the circumstances surrounding his media fame and the publicity his death garnered. What I was less familiar with was the use of Ryan's circumstances in political circles. This book sheds some light on how a life-threatening disease was perceived and how those contradicting perceptions interfered with developing treatment.
Profile Image for David Nanninga .
50 reviews
February 8, 2025
Heartbreaking. Not only for what happened to Ryan White, but that it took someone like Ryan White to get the majority of this country to both truly see people with HIV/AIDS and to do something (a very inadequate something) about it.
29 reviews
December 17, 2025
Didn’t know much or anything about AIDS or Ryan White before this, so this was a very informative read. Also shoutout to Dr. Renfro!
Displaying 1 - 20 of 20 reviews

Can't find what you're looking for?

Get help and learn more about the design.