What it feels like: Fighting HIV stigma, one meal at a time

"I decided that it was my job to fight. I didn't want to die in my 30s. I love life. I was a good person."

Emma Jones 11 minute read June 22, 2022
chef allan smash hiv stigma, wearing apron "why is my disease is ignorance yours?"

Chef Allan was first diagnosed with HIV in 1988, when living in New York and with his third partner. Credit: Ken Meyers Studio

Content warning: this interview contains references to suicide and violence against members of the LGBTQ2+ community.

Raised in Timmins, Ontario, Allan Carpenter — known to friends as Chef Allan — was encouraged by his Italian family to develop a passion for food and cooking. After high school, in the ’80s, he moved to Toronto to start a career in the culinary scene and then headed to New York where he became a successful restaurateur.

When two of Carpenter’s subsequent partners in Toronto passed away from complications related to HIV/AIDS, he decided to get tested for the virus. He says he was initially relieved when the results came back positive, since he could prevent passing the virus on to anyone he loved. But soon, Carpenter had to find the strength to survive the experimental medications and rampant discrimination against people living with HIV.

HIV is spread when semen, blood, vaginal fluid, rectal fluid or breast milk infected with the virus is absorbed by the body of another person — usually through anal or vaginal sex or through sharing needles or other drug injection equipment according to CATIE. (More information on how HIV is spread is available on the CDC’s website.) HIV cannot be spread through the air, via saliva (including on dishes), tears, sweat or through touching (like hugging or sexual activity that does not involve bodily fluids).

Modern antiretroviral therapy now causes viral suppression and can get patients to the point where the HIV virus is virtually undetectable in the blood. This helps prevent both illness and also transmission of the virus through sexual intercourse.

Carpenter sat down with Healthing to share his experience of living with HIV in the ’80s, how he got the name “Chef Allan” and what it was like to cook for the the recent sold-out HIV awareness event June’s HIV+ Eatery.

This interview has been edited for length and clarity.

What led to your diagnosis?

I was diagnosed officially with HIV in 1988. I was living in New York and enjoying life with my third partner. My first two partners died of AIDS, so when I fell in love the third time, I thought I was a carrier. So both my partner and I went and got tested and I found out I was positive. Basically, [at that time] they told you to go home, quit your job, stay away from stress and write a will.

What went through your head when you tested positive?

First of all, I was happy knowing that I was positive. I was not going to give it to the man that I was in a five year relationship [with]. I loved him.

My first husband got wasting syndrome (a complication of HIV, marked by a loss of more than ten per cent of the patient’s body weight and fever or diarrhea for 30 days or more) and went blind. He committed suicide because, in those days, the doctors would give you some pills to help you go away. And then my second partner got Kaposi Sarcoma (KS) (KS causes cancer cells to develop in the skin and mucous membranes that line the gastrointestinal tract. It occurs in immune-compromised patients that have also come into contact with human herpesvirus 8). He died in three weeks. So I figured that if I’m a carrier [of] this disease that they know nothing about, I could never give it to somebody I love. That’s why we went and got tested. So I felt relieved for my love.

But the next day I woke up and thought, What does this mean? I just continued to live for five years [because it took that long to show symptoms]. There was all this paranoia. In New York, they wanted to put us in isolation and quarantine us. Some guys committed suicide, some guys lost their apartments. Some guys lost their jobs — they were teachers. But I decided that it was my job to fight. I didn’t want to die in my 30s. I love life. I was a good person. I decided to give all the pills a shot. In those days, we would take about 80 pills a day.

There was this young doctor who was my age, and I said to her, ‘Why are you interested in me? I’m gonna die.’ And she said, ‘You’re my age. You shouldn’t be dying. I want to help you out.’

I always got great help even though in those days, [doctors] didn’t know what they were doing. They were trying to figure out the dose [of medications], and when and how to take them. Then there were the ‘bad’ [pills] — I took both ddI (didanosine) and d4T (stavudine), which is not being used anymore, thank God. One of the side effects of ddI was chronic neuropathy. I have that in both my feet and hands —  I don’t feel my hands or feet. At night my feet swell up, my toes, burn my hands burn.

I had anaphylactic reactions [to one medication], this drug, Sustiva. I took the first pill on a Friday and by the evening, my lips have swelled up over my nose, and my nose swelled up over my eyes. I turned red and I was rushed to emergency. No one would come into my room. I was there for three hours and then I walked out in the nude with [my IV]. Security stopped me, and asked where I was going. I said, ‘I’ve been here eight hours, I take pills that need food. I’m going home.’ He brought me back to my room and then two doctors put on hazmat suits, and gave me Benadryl in one arm and something else in the other arm. That was my first anaphylactic reaction. It could have killed me.

How did it feel to not get help while you were in the hospital?

I felt like I didn’t belong in society — like a third-class citizen. I felt like I already ran through the stigma of being gay in a Roman Catholic town. It wasn’t my choice — I was born that way. And then to find out I had HIV … I could deal with it, but everyone else couldn’t. I wasn’t ashamed, I didn’t feel sorry for myself. I just knew that I was dealing with something unknown and that I had to listen to the doctors and do whatever they say and take all the pills.

We were scared out of our minds. And we were sad that we had to tell our loved ones that [we] didn’t know how much longer [we] had. But I was brought up to fight, so I fought my heart out. I continued to survive until came back to Canada — that was in 1996. And that’s when I really got sick and I was told I had six months to live.

Why did you leave New York?

My doctor said, ‘Allan, you’ve got to go home. Medical care is better there. Even if you die there, you’ll be more comfortable.’ I didn’t want to go because I had lived in New York for 15 years, and all my friends and family were there. But I luckily got out at the age of 40 and got an apartment downtown [Toronto], in Casey House. To live there you have to [have] HIV. Casey House was a home. My last friend died in 1998; all my friends died. All those years, friendships, dinners — died. I was afraid to make a friend because I was sick of funerals and I was sick of missing my friends. But as I got better, I started just getting more help. It takes like a huge team of people to take care of you on so many levels.

But the emotional stuff that you go through — going to a friend’s place for dinner and they give you paper plates and plastic cups, and they have you sit at the children’s table. They’re your friends, but they’re afraid.

It’s unbelievable there are still people who don’t know how HIV is spread.

Last week, I got a shower bench that sits inside and outside the shower. The delivery guy came to drop it off, and he sees my movie poster that’s a picture of me [from] a fundraiser that I did for Smash Stigma, a campaign by Casey House aimed at tackling the stigma around HIV. In the picture, my apron says, HIV is my disease, is ignorance yours? So the guy’s looking at me, and I’m looking at the four pens in his pocket and the chair’s in the hallway. Then he says, ‘Now you’re going to go get a pen. I want you to sign this. Because if that’s you in that picture, I want to get the f*** out of here.’

When did you get into cooking?

I grew up in an Italian household — by age ten you learn how to make wine, you learn how to make soppressata (dry salami). You watch your mother cook. Food is life, food is conversation, food is everything to us.

When I got to Toronto after I graduated from school, I worked for the Sheraton Centre and found that the food and beverage industry was my calling. I was on top of the world when I moved to New York — I opened seven restaurants in 14 years in Manhattan.

When I came back to Toronto, I started to feed people who lived on my floor and homeless people. And then in May of 2017, Smash Stigma and June’s HIV+ Eatery created the persona Chef Allan. So 14 of us opened up a pop-up restaurant for three days because 50 per cent of Canadians would not eat food from a person with HIV.

How does it feel to be able to get back into running a restaurant again?

It feels like I’m useful. It feels like I’m productive. It feels like I’m part of society. I fit in again, even though I know I [have] HIV. It gives me great happiness, even though I’m restricted with my disabilities.

How do you keep going when you’ve had to contend with so much stigma?

First of all, I don’t want my mother to have to go through [her son] dying before she does. I do not want to cause my mother’s pain.

I also want to thank all the people that spent time taking care of me and pay them back by seeing me healthy. I want to say thank you, [but] thank you isn’t enough for me because they saved my life.

In the old days when you went to Casey House, you went there to die. Simple as that. [Its purpose was] to assist you to die with dignity and love. But now I go to a Casey House day program, I get five meals a day, and I have a foot nurse, a massage therapist, and a physiotherapist. I go on outings and [I’m] in the community. They’re doing all that for me, so I’m going to become Chef Allan and do this restaurant event every year so they can make a couple $100,000 and keep up the good work.

I’m so lucky to receive all this love, compassion, dignity, acceptance, a safe place — it’s so important for me to be in a safe place, a safe environment that not only accepts me as a [person with] HIV, but also now [that I have a disability]. I think I’m lucky.

I love life. We’re a community — a community that is stronger together. And I see that community when I fight to stay alive and survive. I do my best, out of respect to the government who pays for everything for me and to my care team that has never given up on me. I have kids coming up to me and hugging me and thanking me for taking the pills — because I took 80, they only have to take one, two or three now.

It is incredible that despite everything you have experienced you are still giving back.

I want to change everyone’s perspective. I remember in the early ’80s walking down Yonge Street and a group of gangbangers threw my lover into the street to get run over by a car. That was their hobby — to come into the city and beat up gay men.

We used to go to the Halloween nightclub parade, and the police would stand [between us and the onlookers] and let them throw eggs at us as we walked into the dance hall. This is 1982 in Toronto. When there’s that much stigma, you have a number of choices. You can feel sorry for yourself — but that’s a waste of time. People have it worse than me. I’m gonna survive. You know?

Casey House is always good to me. I don’t mind not having money. I’m surrounded by a few friends who give me a lot of love. I have great caregivers. I’m close to my mother and my brother.

I can’t open restaurants anymore,  and I can’t jog in the park anymore, but if I can educate and provide compassion to the innocent people who are still getting HIV, it would be my honour to help — because I got help.

Readers interested in Learning more can visit the Canadian AIDS Society, the Community AIDS Treatment Information Exchange (CATIE), and Casey House. June’s HIV+ Eatery event is sold out, but information on upcoming events can be found at the Casey House website.

 

Emma Jones is a multimedia editor with Healthing. You can reach her at emjones@postmedia.com or on Instagram and Twitter @jonesyjourn.

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