It’s still a thing

A few weeks ago, it was PWA‘s 30th anniversary. This is charity I hold near and dear to my heart, as you’ve probably gathered.  I sit on the steering committee, and I’ve ridden my bike from Toronto to Montreal several years in a row to support them. The Bike Rally (It’s actually The Friends for Life Bike Rally, but we shorten it) is the sustaining fundraiser for this charity – the money we raise provides just about half of their funding each year, which is a rather amazing thing to consider, when you think about the fact that it’s a bunch of regular people getting it done, just because they care.  To celebrate the charity, the Bike Rally organized something we called 30 for 30, and we went and rode on stationary bikes (in shifts) for thirty hours straight, down at City Hall.  It wasn’t meant as a fundraiser – just an opportunity to raise awareness for what we do, and what the charity does – which is provide real, tangible, practical help for people living with HIV/AIDS.  (This help varies – from helping people with money, to providing an essentials market (that’s their dignity based food bank) to helping access medication and services, to haircuts and help with their children when they’re sick, or need to go to the doctor. They also help train medical students, and reduce stigma in the community. It’s important stuff.)

30430 2017-05-22

So we all went down, a bunch of us – and we each did a few hours on bikes, talking to people as they passed by, and suggesting that they consider riding with us – or finding out more about PWA.  Now, Toronto’s a big, busy diverse city – and if you’re going to hang out in front of City Hall for 30 straight hours, you’re going to meet all sorts of people – and we did. There were people interested in riding, people to cheer us on, City Councillors looking to know more. and even a few people who will end up accessing services through PWA. I want to talk about one particular moment though – one person I met.

onbikes 2017-05-22

I was spinning on the bike (well, and knitting, let’s be honest here) when a gentleman approached me, and asked what we were doing. I told him, giving him a pretty standard set of lines, and at some point he stopped me and he looked at me, and he said “Wait – People with AIDS?”

Now, there is still a lot of stigma out there. People still have all sorts of crazy ideas about HIV/AIDS, and some of them are pretty negative. A lot of people still think it’s a virus that only gay men get, or that you’ve got to be pretty stupid to get it, or that it’s a punishment, or… well. You get the idea. I braced myself, ready to counter whatever he came up with, or, I thought I was ready, but what he said just about knocked me off my bike.

“Hold on,” he said, and paused, looking sort of shocked… “Are there still people with AIDS around? I mean… ” and here he paused again, and looked around like he expected them to be descending upon him… “Is that still a thing?”

I got a hold of myself quickly, and I explained nicely that it was indeed,  still a thing, and that there were still people with AIDS around, and gave him a couple of facts, and off he went, as surprised as he could be. I rode my bike for another few hours, thinking about that, and wondering how any right minded person could feel the way that this guy did, and then I came home and I had a conversation with a friend about how wild and crazy that was. How could he feel that way? How was that possible?  My friend is a thoughtful person, and very clever and good with people and they were far, far more forgiving and understanding than I am, and they made some really good points in the guys defence.

My friend noted (correctly) that this is a cause that’s been downgraded. There are excellent drugs now, and people with HIV/AIDS are no longer receiving a death sentence with their diagnosis – provided they have access to that care.  It still claims lives, probably more than most people think, but for the most part, with good management, people live a long time. That makes this all seem less important, my friend stressed. It no longer seems like a crisis, and nobody understands how we got here, what’s still going on, and what it takes to make it this way.

They were right. Years ago, this was an easy cause to get attention for. The situation demanded attention – the depth of the crisis couldn’t be ignored, it was everywhere. The response was terrific. Drugs were developed, systems of support put in place, education programs begun, a lot of people worked hard to reduce ignorance and stigma around it, and organizations like PWA were at the forefront. In many ways, this all worked, and did a lot of good. That’s how we got where we are now – which is a place where an ordinary person could think “AIDS? Is that still a thing?”

rideintherain 2017-05-22

(Ken and me yesterday, completing about 60km. In the everlasting rain.)

The problem is this – now it doesn’t seem important, it all seems like maybe it’s coming together and it’s going go be okay (as long as we don’t look at Africa or other places where people don’t have access to this stuff, because things definitely aren’t okay there) and now the natural response is to cut funding, quit supporting these programs and charities, and dust off our hands and say “Thank goodness we got that under control” without stopping to think that these programs we’re all backing away from? They’re the things keeping this okay. They’re the things saving lives. They’re the thin barrier standing between the way things are now and the way things used to be. The virus has not changed. It is as dangerous as ever – only the forces allied against it hold our gains.

We see this everywhere. Funding cuts, cuts to education, drops in fundraising… even the Bike Rally was smaller and raised less money last year – and yeah – that resulted in cuts in personnel and programs at the agency. There’s less help now. Less access to the things that save lives now, and fewer people trying to make things better. That would mean we’re going to go backwards, and the crisis is still there – it just has a very good bandaid on it, and that bandaid is threatened.

This is heartbreaking for me.  I know several people who are HIV+, and I bet you do too, whether you know it or not. (For lots of reasons, we still live in a world where there’s so much stigma around this that a very many people choose not to disclose their status.) I don’t like it- I don’t like what this trend means for their health and lifetime of well-being, and I don’t like what it says about our culture, and so.. this is all a long way around saying that Team Knit (despite 4/5 of us being rather desperately middle-aged) is getting on their bikes again this year, fundraising again this year, and that we would really, really like your help making the magic happen again, if it’s possible for you to do it.

Team Knit is:

Me

Ken

Cameron

Pato

Jen

That means that in 9 weeks and 5 days (yikes) we’ll get on our bikes, and ride about 660km from Toronto to Montreal. (For my American friends, that’s about 410 miles.) We’ll give up our weekends and some of our weekdays between now and then to train, we’ll dedicate hours to fundraising, and that’s how a week of holidays will be spent. We’re trying to make the world a place we like better, and sturdy up that bandaid.

Our decision to ride our bikes to Montreal helps nobody, and makes no difference, not without you – as a matter of fact, you’re the important part.  Once again, I’m going to try and raise a ton of money, and like last year, I have a private and deeply personal crazy-pants goal. To this end, I’m going to do things the same way as last year, because knitters, you were amazing.  We’re going to do Karmic Balancing gifts again. Once a week (or so- maybe a little more or less) between now and the Rally, I’ll choose from amongst the people who’ve helped and redirect a knitterly (or spinnerly) gift from someone else who wants to help.*

It’s going to be all about the Karma – just like we try to make it every year. We’re trying to change lives here, make things better for some people, and there’s so much more to that than money, so, here’s the thing. If you donate to anyone on our little family team then please send me an email letting me know you’ve done so. Make the subject line “I helped” and send it to stephanieATyarnharlotDOTca. (Note the .ca it’s a Canada thing.) Include your name, address, and whether or not you spin.  (For the love of all things woolly, please use the subject line. It makes your email go to a specific folder and you have no idea what a difference that makes to my sanity.) You don’t need to say what you gave, or include proof. I know you’ll do your best, whatever that is, and I know you wouldn’t lie.

Now, we know not everyone has money to help with – so we’re taking all kinds of help.  If you can figure out some other way to do that, that counts.  Maybe you can tell a friend. Maybe you can post about it to social media. Maybe you can forward the email to people in your family who will give…  There’s lots and lots of ways to help, and if you can figure out a way? Send that email, letting me know you did. No money needed. (Of course, money is always good too, and even small gifts make a big difference.)

Knitters, lets go big. Let’s fill up the world with amazing, and when everyone at PWA asks who these people are, like they always do?  Ken, Pato, Cameron, Jen and I will smile and say what we always do. “They’re knitters. We keep telling you that they’re awesome.”

*If you want to contribute a gift, I’m trying to make it easy -It’s a ton of work, and I don’t mind doing it, but I have a better shot at getting it all done if you do this: Take a picture of your gift. Email me with the subject line “Karmic Balancing” with the details, picture and a link, if you want me to use one. When one of the helpers is chosen for a gift, I’ll email you the address, and you can ship it right to them. (It’s not a bad idea to let me know if you have shipping restrictions –  I’ll keep track.) I’ll try to get through them all, though it can be overwhelming. Thank you!

Now, please find attached a completely gratuitous baby picture, because sometimes when I’m riding my bike it helps to think of someone I’m trying to change the world for, and it can’t hurt you either.

Joeandelliot 2017-05-22

68 thoughts on “It’s still a thing

  1. Sometimes all that is needed for good things to happen is just one knitrer. Good on ya Steph. Hope you smash this year’s target (and all those training rides)

  2. Unless a vaccine is developed, HIV/Aids will always be “a thing”. However, it isn’t front page headlines most days now. There are opiate addiction, obesity, and the rise of numerous diseases for which there are vaccines. So, unless you have “a dog in the fight”, it is easy to let it slip into the “yesterday’s worries” bin.

    And that is the other reason that activities like this are important. It reminds people that the fight is NOT over, and there has not been a “victory”, only a respite. Like many diseases, people who have it can be put into remission…but they are not cured.

    • It will be a thing even after a vaccine is developed. I can guarantee that if there is a vaccine, people will stop getting it in 50 years because of some stupid conspiracy theory nonsense.

      We’ve shared a planet with these viruses for millennia. They aren’t even going to just go away, and we can’t seem to grasp that. 🙁

  3. A bit off topic but something I want to say. There are a lot of thin barriers standing between the way things are and the way things used to be. Feminism and Unions/Labour movement come to mind. I hate when people say they aren’t needed anymore. The moment we stop pushing forward is the moment that we stop sliding backwards.

  4. I’m in again this year. A brilliant post, Steph. Ride On, Team Knit! Show Elliot how you can make a difference, one mile at a time.

  5. So well said. I’m behind you every mile -or is it kilometers? ! But so glad to see you and Jen will have each other’s back this year.

  6. Best baby picture yet!

    In addition to raising money(important), you are raising awareness (also so important). As always, thank you for letting us be part of the effort!

  7. Go Team Knit! 🙂 I’ll donate once again, and I’m thinking I might have something to donate as a gift. 🙂 Thank you for the photo of Elliot. I check every day to see if you’ve written and always hope to see a new photo of your gorgeous grandboy.

  8. Doctors without Borders (hey, I’m from the big country to the South, ne parle francais) every month, PWA every year. will do tonight.

  9. I think another reason for people not thinking about the reality of 21st Century North American aids is that the methods of transmission are so well understood. What isn’t so well understood is that condoms aren’t perfect, people don’t always know to warn partners that they might be hiv +, prostitution remains a thing as well and drug addicts still share needles.

  10. No such thing as a gratuitous baby pictures. They are essential for happiness and hope — as the bike rally is for those sick with HIV/AIDS.

  11. No baby picture is every gratuitous, they are all precious and vital and necessary!

    I’m so glad you do this. I can’t ride a bike that far, but I can donate money, and it makes me happy to do it.

    Yay Rally! Yay Elliot! Yay Team Knit!

  12. I haven’t emailed Steph about this yet (SHHHH) but I plan to offer a Karmic Balancing Gift once the biggest donor has been determined: a skein of lightweight Socks that Rock superwash merino.

    Colorway? Glad you asked. It’s called Steph Dyes…because Her Harlotness dyed it her very own self.

    It’s a gorgeous blue/neutral/yellow that has been staring at me reproachfully from my Yarn Shrine since she gave it to me. I can’t take the guilt any more, so I’ve decided to send it out into the world to do good in the broadest possible way.

    It’ll be the most public instance of blatant re-gifting in the history of the world. Just don’t tell her yet. I want it to be a surprise.

    • Since smileys don’t work here I’ll say hooray, clap my hands and you are so awesome and funny and thanks you made my day =D

    • You, ma’am, are the bomb. I always hope for a comment from you and you don’t disappoint. I won’t win the yarn but I love your heart. Off to make my annual small donation to help keep the AIDS boogie man at bay another day.

  13. FTR – There is no such thing as a gratuitous baby picture.

    Thank you for reminding us who we’re doing this for. Or should that be for whom we are doing this?

    Earlene

  14. Thanks for the reminder! I donated to Ken in honor of my husband Kenny’s birthday today. He lost his battle with AIDS 22 years ago.

    By the way my post on Ken’s donation page says “thanks for all you do ??” Those question marks were hearts when I typed them and I couldn’t fix it!

  15. Wow! Joe DOES know how to hold a baby! And Ken looks great with the scruff! And you — you look wet (and fabulous)!

  16. When you see the Olympics and other major competitions, you’re seeing people who are strong and beautiful and recognized by the world for it.

    When I see team knit, I see a group of people who are also strong and beautiful, and whose achievements, while just as great, aren’t honored with medals and awards, but with life continued, in hope and health, due to your efforts, and your love. I could never be an Olympian, but you’ve shown me that every person is capable of changing the world, and you’ve given me a way to.

    Thank you all.

  17. There are, sadly, so many terrible realities held marginally at bay by a thin line…and given that this one is particularly near to your heart, I’m glad to be able to contribute to the cause.

  18. You are such a wonderful, eloquent writer. Great post today. Thank you for reminding me that we still need to help folks with HIV/AIDS. Also, thanks for all you do for the bike rally.

  19. In my experience with perennial fundraising efforts, it’s not so much that people get tired of the cause as that they lose interest in the event. Bike rallies and other multi-day sponsor-funded recreational events have huge overhead costs, and while the participants may stay interested in them even after the novelty wears off, the donors tend not to.

    Maybe the way to go is to keep the annual fundraising drive (including Karmic Balancing, natch!!), exploring fresher and cheaper strategies to attract public attention and support, but dump the massive money- and time-sink of a week-long bike tour.

    • I have been worrying about the same thing–it seems dicey for an organization this important to rely for so much of its budget on something so extremely time-intensive and dependent on super-organization as the Bike Rally. Of course, all fund-raising efforts for good causes are labor-intensive and struggle for visibility. But I wonder if all the knitters Stephanie has woken up to this cause would be willing to donate even if there weren’t a Bike Rally? I know I would. Should this organization seek long-term foundation support or something more stable?

      Stephanie and other Bike Rally fans, please don’t take offense. I’ve donated and will do so again. I’m just turning over thoughts for the best interest of a long-term battle that will continue to be a “thing” for many years.

      • Our county has had a high per capita rate of AIDS since the beginning. When I donate to POW, I also donate to my local AIDS food bank, because they are there for my neighbors. No harm in covering both bases, miles apart.

    • I may be wrong, but I was under the impression that the riders cover their own costs, and that the logistics side of the event is ‘staffed’ by volunteers. I agree with your comments in the general sense (I used to work for a large charity and one reason I moved on was disgust at how much money they poured into their marquee fundraising events), but I think your comments might not apply very well to the Bike Rally. I’m sure someone involved and up-to-date will clarify for me….Steph is friends with a bunch of seriously helpful people.

      • Even with volunteer crew, multi-day bike rallies have a lot of overhead costs (food, transport, materials, etc.). According to Charity Intelligence, PWAF in fiscal year 2015 had fundraising costs as 44% of donations, which sounds to me pretty typical for charities that run events like this.

        Of course, if PWAF has been doing the Rally for 19 years, then they must be making it work! More power to them, because even with the most dedicated volunteers in the world, bike rallies don’t come cheap.

  20. You’re amazing! But I must admit that I didn’t think AIDS was such a big deal in North America anymore either.

    • One opiod-afflicted, poverty-stricken county in my U.S, state (Indiana) had a sudden epidemic of HIV/AIDS and Hepatitis C because of needle-sharing. Then-Gov. MIke Pence (yeah, now the Veep) resisted allowing a needle exchange for months. The total cases eventually exceeded 100 (and I’m pretty sure the county line didn’t contain all who contracted the virus). Pence didn’t want to “enable” addicts, for whom there was no treatment available without the insurance they didn’t have anyway, so his view of addiction asa a moral failing “enabled” a lot more people to contract and spread chronic illnesses.

      • Disgusting. These moralistic bleep-heads have lost all understanding of what is truly moral: to help others through their challenges without judgement, and to ensure the welfare of everyone, not just the people they consider righteous or worthy.

  21. When my country elected Trump (you have no idea – well, yes, you do – how hard it is for me to write that), I decided it was time for me to get off my lazy, head-in-the-sand ass and DO something. So, I have marched (once) and donated (a lot more than in previous years), and I try to be brave and talk about the issues (I live in Massachusetts, so it’s not that scary). Which is a long way of saying I will be tossing the stash tonight after work in search of Karmic gifts and I will be donating to your team, because thank you, all five of you, for your work.

  22. Best kind of baby picture: with Joe! What is it with big guys and tiny babies that is so frikkin cute?!?
    I will be digging deeper this year, may have to check the stash or the library (I have tons of books!) for gifts as well. Hugs to all Team Knit!

  23. “(For lots of reasons, we still live in a world where there’s so much stigma around this that a very many people choose not to disclose their status.)”

    You know that in many/most circumstances this is not something everyone needs to know.

    I am a cancer survivor – so far, so good. Colon, 2004, no colostomy, peripheral neuropathy in hands and feet from chemo, and while I never lost my hair it didn’t exactly do it any favors either. I don’t exactly go around blabbing this to everyone I meet.

    There’s a long story about how I lost a new job opportunity after a corporate takeover cut my whole department. I had been working through it with minimal accommodation but they agreed to put me on disability to keep me covered after the takeover would have cut my position. The headhunter disclosed why I needed a delay in my start date, and the hiring manager had lost his mother to breast cancer and freaked. So no, I don’t disclose my history to everyone I meet. My friends all know, and a select few where I work who had relatives affected and I told them.

    • Agreed. There is tremendous stigma attached to ALL medical problems — I’ve got a couple that damned few people know about, and it’s going to stay that way. People are very, very eager to rip away your employability (which means your insurance and consequently your LIFE in my lovely little land of the fwee and home of the bwave) and even your civil rights based on misunderstandings of medical things they couldn’t begin to comprehend.

  24. Every crisis in the world is like that. Humans are not good at maintaining vigilance about problems that can only be managed and not outright solved. This is how we get people who stop vaccinating their kids because “no one gets measles anymore,” or say things like “who needs feminism? Aren’t we equal now?” or even things like, “The O rings don’t need safety checks, we always pass them anyway.”

    There are a very small number of problems that can be solved, period. There are many, many more that need a constant low-to-medium habitual level of awareness and vigilance.

    As a species, we’re not that good with the second type of problem. 🙁

  25. A well worded reminder!

    My donation is technically for both you and little Elliot, we all know he will be participating when he is able to and will be there with you in your thoughts the whole time!

  26. I’m a nurse in the States and recently took care of an HIV+ patient. He comes from a different culture and the sad thing is, in many cultures it most definitely is still a thing because they don’t talk about it. They don’t seek treatment, whether it be for cultural reasons or possible fear of deportation or God only knows what. His girlfriend saw what his body looked like, sees every day what he goes through…yet she refuses to get tested. She refuses to seek treatment. It is most definitely still a thing.

  27. Hooray for Jen riding again! Thanks to all of Team Knit, and Team Bike Rally for loving people who might be feeling unlovable.

  28. I wanted to donate a specific amount in US dollars to commemorate an occasion, but the confirmation converted it to Canadian, which means less for PWA. Is there a way around that?

    • That happened to me once, too. I now look up an online currency converter, input the amount I want to donate in Canadian dollars, see what the US equivalent is, and donate that amount. (Touch the world… how appropriate)

  29. Thank you for the gratuitous picture of little chub monkey. And his cheeks are indeed glorious, He will have such lovely face structure when he gets grown. My youngest had such cheeks and now has these lovely double dimples, in a nice wide jawline. I miss babies, my grans are 14 and 9, respectable ages but oh the loveliness of those baby days.

  30. You know…. I wonder how it would be if there was a Team Elliot, and I wonder if he might not just top you all in individual fund-raising, and how cool would it be for him to be able to crow about that for the rest of his days. Yay Team!

  31. And just to build on your points, here in Saskatchewan HIV infection rates are on the rise, especially in marginalized communities. So while AIDs is less of a “thing” for many of us in our daily lives, for others, it remains as insidious as ever and speaks to the lasting legacies of colonialism.

  32. While teaching the history of medicine and public health, it is truly eye opening to me to see students react to the film How to Survive a Plague. The history just isn’t that ancient and they can’t believe that people died of AIDS within weeks or months of diagnosis in the 80s and 90s. It is rare that you get to see students really question what they know, but teach them about the AIDS epidemic and remind them that it wasn’t always a somewhat treatable endemic disease, and watch them flip out.

    This is bad because in many ways you can’t get the recognition needed for public health campaigns. But it is also very interesting when you think about social stigma and the inclusion of HIV positive individuals in our society. The current conversations about HIV positive couples having children and about PReP show just how integrated HIV positive people have become back into society. And when you rewatch shows like Real World San Francisco and think about the world being introduced to Pedro Zamora, when people were literally afraid to touch an HIV positive person (even healthcare workers) and when you remember the days that kids weren’t allowed to go to school because of their positivity–we’ve got a long way to go but it is heartening to feel like so much progress in social and scientific understanding has been made. And you’re part of that change!
    Good luck this year!

  33. Yaaa, Bike Rally! And in the meantime:

    WHAT CAPTION WOULD YOU PUT ON THE PHOTO??

    mine: “And that really happened!” “Nooooo….really, Grampa Joe?!?”

  34. I can so appreciate your view on the ignorance of some people. I am however, much more concerned about the willful ignorance of people – the willful ignoring of facts. Facts like climate change! We are currently under an administration that leaves me completely fearful for my son and your grandson. I will as always contribute to your cause because it is a great one and deserves it.

    Oh yeah… that baby is just beautiful!!!!

  35. All of my friends who were HIV+ are dead. It’s still a thing. Don’t be complacent; look at what happened to us in the U.S. When we became complacent.

  36. Thanks for doing this major bike ride again this year. I am happy to donate again this year!
    Knitters may already be thinking about clothing (or yarn) source choices. You and your blog continue to raise awareness of MSF, of paying attention to food choices – and more. Thanks for that ongoing hard work!
    And here’s to more baby photos any time Eliot’s parents are willing to share him with the world!

  37. FYI — Please tell readers that donations in US dollars are converted PRIOR to being paid out. I needed to donate twice to get approximately what I intended to give in US dollars.

  38. AIDS is still a scourge worldwide, and we are just lucky here in Canada that we have so much help that we take for granted, not only in this but in a host of other health matters. I have a friend in California who can’t afford to get a mammogram, something I get every other year at no individual charge to me. I had a brother-in-law, and his partner, leave us before they turned 40, owing to AIDS. That was before the retroviral drugs were available, and taking care of yourself and eating right were about all you could do, but because you couldn’t work, you couldn’t afford to eat right. I attended an international conference on economics and development, and we were all appalled when the delegation from an African nation stated oh-so-matter-of-factly, that they had challenges in economic planning because they anticipated losing 50% of the adult population in the next five years, and their social safety net being almost non-existent, they had no idea how they were going to survive as a political entity, and really no idea how to take care of all the orphans that would result, and no resources with which to meet this health care challenge. We live, even fairly poor Canadians, (and yes, I speak from personal experience) lives in which just being alive and healthy puts us a million miles ahead of the kinds of challenges some people face. I cannot state loudly and clearly enough that a serious illness can and will take away from you most of what you currently take for granted unless you are so well off as not to go through your savings in the YEARS you may not be able to work, and may need all kinds of support over and above medication. It’s too late for my relatives; and I rejoice that we have drugs that help, and people who help; but let us never become complacent. Thank you to you, Steph, and Team Knit, for the amazing work you do, not only in fundraising but in keeping awareness of this struggle alive.

  39. Does your phone still ding when a donation happens? I loved giving bits to you and Team Knit last year so that you got dings especially during icky weather. It made me feel as if I were there cheering, or maybe even giving you a push. How I felt even if fanciful or silly. And I gave a lot more than I planned on. An excellent and important cause.

    And I get to click the leaf, hoping for spring for you.

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