I suddenly understood something that Danny was telling you and that I know: Stigma can feel like a burn, a harsh kick to the stomach. But at the end of the day, it is our decision what it feels like and how we deal with the aftermath, because our interpretation of events gives them power or strips them of any right to touch us. Sometimes it's impossible to walk away from such an experience feeling strong, because it touches on something raw within you that you either pushed under the rug or had just thought of yourself. Sometimes you have a super shield around you and nothing can enter through it. Most days, like all reality, are somewhere in between on the scale.
Excellent. I didn't point out that he never uses the word 'stigma' or 'stigmatised' but was just describing his feelings about how people treated him - and, as you point out, how it affects his expectation of how he will be treated. It is all very complex. And surprisingly little discussed.
Danny's story really hits hard, doesn't it? This precious transcript shows just how tough it must’ve been to navigate life with an HIV/AIDS diagnosis back then, juggling fear, hatred, and anger all the while yearning for love, acceptance and belonging! By sharing this heartfelt interview today, Ann, you remind me how important kindness is. How, in the face of adversity, empathy and compassion are our strongest antidotes to stigma. Thank you so much for sharing.
Can you imagine that, back in 1991, I had 20 such interviews, each a little different, but all enormously powerful? All told by people younger than myself (I was just under 50) who were soon due to die. I felt I was holding on to something very precious, that I needed to work on them very quickly but with enormous care.
The resulting book was published in under a year (very rare in those days) but still too late for the man with whom I had dreamt up the project, who died from AIDS in the intervening months. I refused to take any royalties from the book, as it just seemed inappropriate in the circumstances, but instead gave them to an AIDS charity which offered hands-on help. When I sell the occasional book now, yes, I do take the royalties, but my real pleasure is the fact that I wrote it at all. Did you read Daisy? (https://arichardson.substack.com/p/daisy). Have tissues ready!
Oh Ann, I've just finished reading Daisy. What incredible interviews! Sometimes there are just a few words available and this is one of those times as I type and weep. Your work is beautiful and, no doubt, remains deeply rewarding to you. What an incredible journey you found yourself on during this time. Thank you so much for sharing these precious interviews with us.
I missed this comment earlier today, Deborah. Deeply rewarding is the word. Daisy’s mother was amazing and, quite against the rules of research, my colleague and I kept in touch with her for a year or so after the interview and gave a small financial token of our appreciation to her children when she died. I may publish the rest of the interview (about her life) at some point on Substack. There are so many to choose from.
I have written on loads of difficult topics, but the most rewarding were i) my book on people with HIVAIDS, ii) my book on hospice care and – probably the most poignant of all – iii) my book on parents with sons and daughters with learning difficulties who lived at home about what would happen when they (the parents) died (see https://arichardson.substack.com/p/if-you-love-him-let-him-go). They are all powerful in different ways. Thank you so much for appreciating all this. It means a lot to me, as I have said before and I am sure you know, when people really understand the work.
I had forgotten how terrified people were of anyone who was gay because they might 'have it'. How stigmatised they were. There is something very powerful about the simplicity of this interview. The everyday situations that could be so devastating. the image that remains with me is of Danny playing under the table and just enjoying the moment.
Just restacked your note. I love working with interviews - given the right interviewer (not me) and circumstances, people can be so wonderfully articulate in a straight-forward way. Danny is one example, but I have tons of others from projects done over the years. Many of them don’t ‘belong’ to me, unfortunately, but to the organisation who paid for the research, so I can’t publish them.
I have never ever tried to write fiction. I have so many stories from my own life and the lives of people interviewed, but I am convinced I would be no good at it. I stick to writing what seems to be called ‘creative non-fiction’ which suits me very well. But thanks for the suggestion anyway.
God bless Danny's soul. I agree with him: My God is kind as well and loves and accepts each one of us as we are. I am about to start writing a novel about something similar to what Danny touched on in your interview and it brought tears to my eyes.
From a personal viewpoint, I lost my sight at age three and still meet people who think it is a punishment of sorts. Some people, although not as many as once, still think it is contageous. I believe it is a gift. It happened as the result of radiation therapy for retina cancer. I could have died. It allows me to consciously and purposefully ignore everything about people's appearances and focus only on their personality. It is a blessing and a curse and I love it.
Thank you. I am pleased that you were touched. You might like the whole book, which is incredibly powerful (NOT because I wrote it but because they were all young and all dying and terribly honest - it was my complete privilege to be their conduit to the rest of the world). Good luck with your own book. It sounds like you have something important to say.
Thank you. I guess we all feel this way when we sit to write a book. It's just my way of fighting fire with love, because I believe it's the only way to do it. (I could be wrong, of course, but I must follow my heart.)
I tend to be fired up with enthusiasm with each book I write, convinced that everyone will be bowled over in the same way I am. I must admit, it doesn’t always work out that way, but a few people really ‘get’ what I write and that is certainly pleasing. Rather like the response to this post about stigma.
I meant feeling we have something important to say. The majority of my writing friends feel like that, which makes me happy, because it means they truly want to write the story within them. I'm definitely going to look for your book. I know it will be a moving experience to read it. And I thank you for sharing so much of your personal experience here.
These books (there are others!) are very important to me, because I felt I was letting the world know what people feel, but they were never my story. I was the midwife who allowed them to be born. I have written one book that is sort-of about me, which is the one with the same title as my Substack, advertised on my posts, about why I like being old. It is not so moving as the other books (except in the odd place), but it is the real me.
Midwiving a book is an honour all in itself and without you, it wouldn't have been born. I'm sure your own story is just as moving, but I can understand why you would say that.
I think you might be right about him being special. I tend to fall in love with all the people I interview, because they really give their personality (and all my interviews are on very serious issues). If you haven’t seen them already, I do recommend Daisy (https://arichardson.substack.com/p/daisy about a toddler dying, told lovingly by her mother - it’s a real weepy) and If You Love Him Let Him Go about a mother letting go of her adult son with learning difficulties, which gets me every time. (https://arichardson.substack.com/p/if-you-love-him-let-him-go).Perhaps you have seen these already, I can’t remember.
Hi Ann, I had sort of forgotten how shameful we used to think it was if someone we cared about had AIDS. Indeed, if one of my male students confided to me that he was gay, I would plead with him to try to be heterosexual instead, as if it was simply a matter of will power. Your article reminded me how much has changed in the last 30-40 years. Art
It sure has! It is hard to believe the change. I would guess your suggestion that said student should change his sexual orientation did not go down well!
Thanks. It’s kind of odd that we were planning the same week! I was actually intending to publish something else, but it is giving me a hard time. I wonder what other coincidences will emerge in our lives - nothing on the immediate surface.
I suddenly understood something that Danny was telling you and that I know: Stigma can feel like a burn, a harsh kick to the stomach. But at the end of the day, it is our decision what it feels like and how we deal with the aftermath, because our interpretation of events gives them power or strips them of any right to touch us. Sometimes it's impossible to walk away from such an experience feeling strong, because it touches on something raw within you that you either pushed under the rug or had just thought of yourself. Sometimes you have a super shield around you and nothing can enter through it. Most days, like all reality, are somewhere in between on the scale.
Excellent. I didn't point out that he never uses the word 'stigma' or 'stigmatised' but was just describing his feelings about how people treated him - and, as you point out, how it affects his expectation of how he will be treated. It is all very complex. And surprisingly little discussed.
Definitely. It's almost as if we are afraid of taking over our reactions, reclaiming our right to decide how we are affected.
Danny's story really hits hard, doesn't it? This precious transcript shows just how tough it must’ve been to navigate life with an HIV/AIDS diagnosis back then, juggling fear, hatred, and anger all the while yearning for love, acceptance and belonging! By sharing this heartfelt interview today, Ann, you remind me how important kindness is. How, in the face of adversity, empathy and compassion are our strongest antidotes to stigma. Thank you so much for sharing.
Can you imagine that, back in 1991, I had 20 such interviews, each a little different, but all enormously powerful? All told by people younger than myself (I was just under 50) who were soon due to die. I felt I was holding on to something very precious, that I needed to work on them very quickly but with enormous care.
The resulting book was published in under a year (very rare in those days) but still too late for the man with whom I had dreamt up the project, who died from AIDS in the intervening months. I refused to take any royalties from the book, as it just seemed inappropriate in the circumstances, but instead gave them to an AIDS charity which offered hands-on help. When I sell the occasional book now, yes, I do take the royalties, but my real pleasure is the fact that I wrote it at all. Did you read Daisy? (https://arichardson.substack.com/p/daisy). Have tissues ready!
Oh Ann, I've just finished reading Daisy. What incredible interviews! Sometimes there are just a few words available and this is one of those times as I type and weep. Your work is beautiful and, no doubt, remains deeply rewarding to you. What an incredible journey you found yourself on during this time. Thank you so much for sharing these precious interviews with us.
I missed this comment earlier today, Deborah. Deeply rewarding is the word. Daisy’s mother was amazing and, quite against the rules of research, my colleague and I kept in touch with her for a year or so after the interview and gave a small financial token of our appreciation to her children when she died. I may publish the rest of the interview (about her life) at some point on Substack. There are so many to choose from.
I have written on loads of difficult topics, but the most rewarding were i) my book on people with HIVAIDS, ii) my book on hospice care and – probably the most poignant of all – iii) my book on parents with sons and daughters with learning difficulties who lived at home about what would happen when they (the parents) died (see https://arichardson.substack.com/p/if-you-love-him-let-him-go). They are all powerful in different ways. Thank you so much for appreciating all this. It means a lot to me, as I have said before and I am sure you know, when people really understand the work.
Powerful. Glad to make your acquaintance.
Thank you. Another interview from the same book is https://arichardson.substack.com/p/daisy.
I had forgotten how terrified people were of anyone who was gay because they might 'have it'. How stigmatised they were. There is something very powerful about the simplicity of this interview. The everyday situations that could be so devastating. the image that remains with me is of Danny playing under the table and just enjoying the moment.
Just restacked your note. I love working with interviews - given the right interviewer (not me) and circumstances, people can be so wonderfully articulate in a straight-forward way. Danny is one example, but I have tons of others from projects done over the years. Many of them don’t ‘belong’ to me, unfortunately, but to the organisation who paid for the research, so I can’t publish them.
That’s a shame. But if you remember the gist, and moments stand out,maybe you could write as fiction?
I have never ever tried to write fiction. I have so many stories from my own life and the lives of people interviewed, but I am convinced I would be no good at it. I stick to writing what seems to be called ‘creative non-fiction’ which suits me very well. But thanks for the suggestion anyway.
God bless Danny's soul. I agree with him: My God is kind as well and loves and accepts each one of us as we are. I am about to start writing a novel about something similar to what Danny touched on in your interview and it brought tears to my eyes.
From a personal viewpoint, I lost my sight at age three and still meet people who think it is a punishment of sorts. Some people, although not as many as once, still think it is contageous. I believe it is a gift. It happened as the result of radiation therapy for retina cancer. I could have died. It allows me to consciously and purposefully ignore everything about people's appearances and focus only on their personality. It is a blessing and a curse and I love it.
Thank you. I am pleased that you were touched. You might like the whole book, which is incredibly powerful (NOT because I wrote it but because they were all young and all dying and terribly honest - it was my complete privilege to be their conduit to the rest of the world). Good luck with your own book. It sounds like you have something important to say.
Thank you. I guess we all feel this way when we sit to write a book. It's just my way of fighting fire with love, because I believe it's the only way to do it. (I could be wrong, of course, but I must follow my heart.)
I’m not sure what you mean by ‘this way’.
I tend to be fired up with enthusiasm with each book I write, convinced that everyone will be bowled over in the same way I am. I must admit, it doesn’t always work out that way, but a few people really ‘get’ what I write and that is certainly pleasing. Rather like the response to this post about stigma.
I meant feeling we have something important to say. The majority of my writing friends feel like that, which makes me happy, because it means they truly want to write the story within them. I'm definitely going to look for your book. I know it will be a moving experience to read it. And I thank you for sharing so much of your personal experience here.
These books (there are others!) are very important to me, because I felt I was letting the world know what people feel, but they were never my story. I was the midwife who allowed them to be born. I have written one book that is sort-of about me, which is the one with the same title as my Substack, advertised on my posts, about why I like being old. It is not so moving as the other books (except in the odd place), but it is the real me.
Midwiving a book is an honour all in itself and without you, it wouldn't have been born. I'm sure your own story is just as moving, but I can understand why you would say that.
My heart breaks for anyone who’d be cut off from family because of sexual orientation or HIV. He sounds like a very special man.
I think you might be right about him being special. I tend to fall in love with all the people I interview, because they really give their personality (and all my interviews are on very serious issues). If you haven’t seen them already, I do recommend Daisy (https://arichardson.substack.com/p/daisy about a toddler dying, told lovingly by her mother - it’s a real weepy) and If You Love Him Let Him Go about a mother letting go of her adult son with learning difficulties, which gets me every time. (https://arichardson.substack.com/p/if-you-love-him-let-him-go).Perhaps you have seen these already, I can’t remember.
Hi Ann, I had sort of forgotten how shameful we used to think it was if someone we cared about had AIDS. Indeed, if one of my male students confided to me that he was gay, I would plead with him to try to be heterosexual instead, as if it was simply a matter of will power. Your article reminded me how much has changed in the last 30-40 years. Art
It sure has! It is hard to believe the change. I would guess your suggestion that said student should change his sexual orientation did not go down well!
Thanks for the mention, Ann. Great article!
Thanks. It’s kind of odd that we were planning the same week! I was actually intending to publish something else, but it is giving me a hard time. I wonder what other coincidences will emerge in our lives - nothing on the immediate surface.