And Just Like That... Woke with Jokes?
Sex and the City revival series And Just Like That… preaches ‘wokeness’ yet uses ableist language. In S1 E5, ‘Tragically Hip’, Carrie Bradshaw refers to arthritis as ‘Old Lady Disease’. I was diagnosed at 18 months and am sick of being misrepresented. My pain isn’t a joke.
I was diagnosed with ‘Old Lady Disease’, as Sex and the City’s Carrie Bradshaw (played by Sarah Jessica Parker) calls it, when I was a baby. Eighteen months old. I’ve been dealing with this ignorance for too long and it’s time for the world to wake up.
I’m cringe watching the HBO revival series, And Just Like That… as a former SATC fan. I know that all language can be problematic and, working in media, I get that there are bigger things happening in the world to get upset over.
When you have a captive audience - don’t do further harm towards a disadvantaged group while preaching ‘wokeness’.
Would Carrie have said that in episode one to her coworker who uses a chair? Would the writers or SJP herself say, ‘too bad about that old lady disease’ to a toddler on chemo puking their guts out to salvage tissue? I doubt it.
Below is a Twitter thread that I posted while catching up on the ‘Tragically Hip’ episode. I had to pause it to react, in the moment, on social media (as one does)… Let it be known that I am, at age thirty five, currently waiting on double hip replacement surgeries and a joint fusion/corrective surgery on my right foot. I had my left done at age seventeen.
“It’s arthritis, right? I have OLD LADY DISEASE in my back?” - Carrie Bradshaw on S1 E5 of And Just Like That…
@HBO @AndJustLikeThat do you have disabled people on staff? This language is hugely upsetting. I was diagnosed with RA as an infant, Hi!
This was one of my many, many intravenous drugs. Chemotherapy is a popular method of treatment to fight Rheumatoid Arthritis.
When you spend a significant chunk of your childhood in hospitals, you become well acquainted with the playroom!
Splints on my wrists were intended to keep my joints from deforming as I grew. I know they didn’t stop my range of motion from deteriorating. I have some deformities now as an adult, so I’m not convinced splinting works.
Juvenile (Idiopathic) Rheumatoid Arthritis patient (me) pushing my IV while out for a stroll in hospital. Ever try to get dressed when you’re attached to a pole? It’s not easy.
Carrie’s comments aren’t problematic to those who haven’t lived my life. Between chemotherapy, surgery, wheelchairs & chronic pain/fatigue, I also got heavily bullied for having OLD LADY disease.
Children get arthritis too.
You can’t take back those comments. They’re out there and echoed and echoed and echoed, reaching the ears of children who are very sick and tired and fading… More disabled people in media, please. PLEASE. I volunteer. I will consult with anyone (serious), for free, RE: ableism.
My whole life (like, til death) involves arthritis. It would be nice for people to accept that it’s not an OLD PERSON DISEASE. It’s rare in kids but it happens. I work in media & I want more representation NOW.
Note the swelling in my knees.
Using a wheelchair helps save energy and tissue damage. It also is helpful when I can’t walk.
My splints didn’t stop me from making the most of things!
At 35, I still use my wheelchair when I have tough days.
Arthritis has many forms. How anyone chooses to imitate, accept, react to any of its forms as they present personally or in someone close is fully up to that person. I’m not telling you how you should address the disease or it’s symptoms - I’m simply asking that you consider this diseases devastation to kids who already feel misunderstood, misrepresented and or ignored.
Here are some other things I’ve posted to educate people about autoimmune diseases and the misconceptions that create barriers in our lives:
Bluesfest 2018 wrap-up
I have had issues with Bluesfest in the past. Mostly just a rough run in with some security staff who poorly handled my request for assistance (as advised by police) RE: accessibility needs. It’s old news. I’ve learned from that run-in and I hope Bluesfest and their subcontracted workers have, too.
I did not attend the music festival last year so this time around, I didn’t want to miss out! Despite what happened in 2016, I 100% do not hold a grudge against what I consider to be one of the most fun times in Ottawa. I had to go.
Beck, Sturgill Simpson, The Strumbellas, M. Ward and the Foo Fighters (to name a few) were all top notch.
Lines were lengthy to get in but moved very quickly. I did not require assistance with the festival’s A-Team (accessibility volunteers) this year, though I have heard through a few friends that they were very helpful. This is obviously great news!
I also noticed that a few music lovers with accessibility challenges had some struggles with Bluesfest reps, which can be wildly soul sucking (I know). To this, I wonder if Bluesfest would be interested in partnering with a person or team who’d be willing to prearrange accommodations for individuals with unique needs to ensure everyone is able to enjoy this glorious festival. A liaison who connects with the individual or their care worker who can get their needs met or heard prior to the event in order to best judge whether or not a day at Lebreton is feasible.
One woman who’s story really hit me, was Katie. I saw Katie’s story unfold on Twitter. A stage 4 cancer patient desperate to see the Foo Fighters was allegedly told it wasn’t a good idea for her to attend as she could not be promised an accessible place to sit, nor access to her vehicle should she become overwhelmed or need medicine.
Another person who voiced her concerns via Twitter was a young woman named Samantha. Samantha, again, had very unique issues holding her back but she didn’t want to miss her favourite act, Greta Van Fleet. Luckily, she ended up being able to make it after making some contact with the group (via social media).
Many friends have reached out to me personally asking for guidance when it comes to Bluesfest’s accessibility. I never did get an apology or answers of any kind... I don’t need or really ever expect that. What satisfies me is hearing about the positive changes that have been made and are continuing to be made. I have faith that people want to help. No one wants to put other people down. Music is what unites us. It shouldn’t discriminate.
When a friend (who’s young son needs assistance getting around) asked me if I knew of any parking allowances or accessibility aids that might help her family have a carefree evening at Lebreton. I sent her some links but decided to go the extra mile to ask questions in person (of BF staff and War Museum reception, for on site parking).
I live close to the grounds and now, with my motorcycle, it is very easy to scoot somewhere and ask questions without really leaving the bike!
I spoke with two security members (same company from 2016) who were very understanding with my questions & why I was asking them. They said that the family could drive in through the gate to have their son (and a parent) dropped off in a non stressful way right by the front gates. They would have to do it pre-5pm as the roads close, but HEY! That’s something, right?
An accessible drop zone, that would be huge.
Absolutely huge.
For persons who do not have accounts with ParaTranspo (which can be tricky to set up, especially for just one event/outing), some understanding and cooperation with Bluesfest regarding a hassle free drop off/pick up zone would be incredibly helpful.
How do you ensure this area doesn’t get abused? A liaison working with the accessibly challenged AND the festival would have it all planned out ahead of time.
While I understand that many persons with accessibility issues have deeply unique and possibly intersecting ailments, I want to believe that what is being done to accommodate such individuals could go further. Some people will not be able to attend. I get it. Some people could attend, but need help planning their day/night out to ensure the best chance of success.
Let’s help everyone enjoy this great festival.
Furthermore, I helped myself out by buying one of these inflatable couch thingies which is very awkward and embarrassing to set up but once inflated, it provided hours of comfort and helped me rest up for maximum fun (and the walk home). If you have rheumatoid arthritis or an ailment that makes walking/standing hard, these inflatable thingies are super compact (when deflated), lightweight (less than 1kg) and very comfortable (the brand I got is Vansky). A newfound festival staple!
STANDOUT MEMORIES from this year: the additional toilets are great! Noticed heightened security and a larger police presence (IMO: also great) and Beck. Wow, Beck was gooooood.
Thanks for another year of big names playing in our backyard, Bluesfest. Til we meet again.
*July 15th: Originally posted from my phone, will likely undergo format editing to add more context and style.
**July 16th: Has been edited to include multimedia and direct links to sourced content.
Aurora's Birth Story
This pregnancy was similar to my last, with little Everett born January 2015. Long, hard and gross. Very gross. I think I was sicker than I've ever been with little R in my tummy. I was hospitalized (briefly) with strep throat and had countless viral infections (mmm... pink eye, multiple times). Happy to say little R made it through and appears to be one happy and healthy babe, but we're skipping ahead here...
Unlike with Everett, Aurora was a planned baby. Ryan and I knew we wanted another child. Our families knew. Work knew. It was thoroughly planned and lucky for us, it didn't take long to conceive. I'll admit it: a planned pregnancy is a little less exciting than an unplanned one! I had been taking the vitamins, laying off the sauce and habitually peeing on sticks for a couple months before the wonderful confirmation came.
Like I said before, the actual pregnancy on me was rough but since baby was doing okay in my belly the doctor thought that attempting VBAC (vaginal birth after C-section) might be a good idea. It is said to lessen recovery time among other things. Though I wasn't super into the idea of VBAC based on what had happened during Everett's birth (emergency C-section/a whirlwind story), the idea of going for it naturally was still somewhat appealing and a shortened recovery time was definitely up my alley. I did have another baby (Everett, 2 years and 2 months) at home, after all.
We had discussed this early on and I had months to do some research and really make an informed decision. All the while, I was working full time. I know, I know. I work on the radio. It's not a physically intense job by any stretch but believe me... When you're exhausted, your brain & mouth don't tend to work as well as they used to and I was exhausted! Sure beat being unemployed though - as was the case when I was preggo with E. That was another level of stress I'm very happy I didn't have to deal with this time 'round.
“Birth is a trip. It’s a mental, physical and emotional journey that is personal to every person who experiences it first hand.”
I stopped working at the end of February. The plan was to schedule a C-section but to be open to VBAC if I went into labour early and things were looking good. Baby was measuring big (85th percentile) near the end which made the possibility of delivering her naturally seem very, very frightening for me. I'm little and she, like her brother, was BIG.
Nearing my C-section date I got very "inside my head" about all the things that could go wrong. I was thinking a lot about death; what if she didn't make it? What if I didn't make it? What if we both died? I was also worrying a lot about how this new addition to the family was going to affect little Everett. My first baby! Our little surprise who quickly became my whole friggin' world; how was he going to react to a new baby? Would I love him less? How could I make sure everyone got the right amount of love and attention?
So many unanswered questions and I was also freaked out about going into labour naturally and having to experience a vaginal delivery I didn't really want to have but does choosing a repeat C make me lazy? A bad mom? Am I robbing baby of a natural entry into this life? Seriously. These are the thoughts that were going through my mind which is why, nearing her arrival, I blocked out all baby talk. My apologies to those of you whose text messages and e-mails I didn't return.
March 20th... the wait is over.
Ryan and I headed to the hospital for an 8AM check in. While waiting for a room in Labour and Deliv. we bumped into the OB who'd be delivering our baby. Shout out to Dr. Garber, by the way, who was totally right about a scheduled C-section being a wildly different experience than an unscheduled or emergent one. He was on his way to deliver a baby (via C) the hard way. That news kinda helped to calm my nerves. I made it through a difficult C with Everett, so today should be a slice of cake, right?
Velia was the first nurse who helped us out once we made it to the pre-op/waiting room. She is really awesome and I told her about this blog so "HI VELIA - If you're reading this - you were one of the best parts of our journey!" I got a little queasy and had to lay down when the IV went in. Yes, I hate needles. Muchly.
8AM... 9AM... 10AM... we were joined by another couple (separated by a curtain) awaiting their C-section. Knowing other people are undergoing the same scary thing as me has always been something I found calming. I was also watching the clock because I had asked my coworkers at the radio station to put on a special song for Aurora's arrival, scheduled for sometime between 12PM and 1PM.
Shortly after 12PM we were escorted into the OR. Well, I was. Ryan had to wait until the anesthetist said it was okay. I've never WALKED into an operating room before so this was a first! The room was intimidating to say the least but I knew I wasn't the first who'd be experiencing this today. Shortly after hopping up onto the bed, I asked the medical staff to tune the radio to 106.1 CHEZ. You see, during Everett's birth I asked the same and got to rock out to an epic playlist during his spontaneous arrival. I was really into the music and not working for Rogers Radio at the time so it was quite the keepsake when Robin (Harper) and Steve (Colwill) answered my request for the playlist.
You don't see much when you're lying there so it was very nice when Ryan was let in. It was also super nice to know the person heading the surgery! Last time was a major blur - it all ended well, but it was really scary in comparison.
Everything below my breasts was warm and fuzzy and then completely numb. The time between going numb and the countdown to baby's first cry I find the most intense... You know it's ON and your life's going to change within the next 30-45 minutes.
There was a lot of pushing, pulling and talking with the staff. Everyone in there was great and, just like I told them pre-op, I forgot most of their names. Except Heather! Heather was there during E's delivery and she actually remembered me thanks to the radio connection.
Aurora "Rory" Stardust joined the outside world on March 20th at 13:13 weighing 8lb 6oz to U2's New Year's Day.
Her brother, Everett was born January 9th at 11:11 weighing 9lb 6oz to AC/DC's Dirty Deeds (Done Dirt Cheap).
The whole procedure was a truly great experience. She came out a beautiful, healthy baby girl and I managed to pull through okay. There might be some scar tissue ickiness going forward with it being my second C-section so this will be my last birthing rodeo. Like - FOR SURE.
Everything I was told about scheduled C-sections was absolutely true. It was a cool, calm and collected experience - POST OP. Prior to, I was anything but cool, calm and collected. Birth is a trip. It's a mental, physical and emotional journey that is personal to every person who experiences it first hand. I dealt with it on my terms this time and am absolutely grateful to the staff at the Civic Hospital, Dr. Garber and his team, Velia (that heated blanket you gave us in recovery is possibly the greatest invention ever) and the staff in the Mother Baby unit who took such stellar care of us.
Friends and family - thank you for the support you've given us over the past several months. Thank you for allowing me to ignore you, to hermit and to have the experience I wanted to have. I put myself (and baby) first and highly recommend you do the same if you are on or planning to begin your own birth journey.
A special shout out to Robin and Jacki from CHEZ for sending me Rory's playlist which you can see by CLICKING HERE.
Being asked to PROVE a disability is like being punched in the face.
TL;DR: Accessibility Policy of local music festival needs revision to avoid failing those with "invisible" disabilities.
I want to approach last night's personally humiliating situation with a caring and understanding disposition. I mean, maybe people fake handicaps to get special treatment? That's really unfortunate for people like me who have a (sometimes) invisible disability.
I do not have a ParaTranspo account and driving was not an option with the extreme road closures. My partner and I decided to Uber to the location but were dropped off fairly far away due to said closures. Hundreds of people including police and security witnessed me "doing my best" to walk (which was more of a painful hobble) from Scott and Preston down to Wellington.
Once there, we were told by a security person to talk with the accessibility volunteers working a gate that was fairly close by.
"Yes!" I'm thinking. "Finally, we can get in and sit down!" Because at 30, I have to sit down at a concert because it's too painful to stand for a length of time.
July 13 EDIT: We were instructed by a police officer and festival security to speak with staff at the Para Transpo/Accessible Entrance gate to gain nearer entry to festival grounds. At that gate, volunteers told us we couldn't enter without proving my disability. Look down and to the right for some of the things security asked me for. None of these items are listed under the festival's "Accessibility Policy" so there is no way for festival goers to know.
As a result, we had to walk to the main gate which was much further away. It was very painful.
I don't want to relive the experience that keeps playing over and over in my head this morning... It was humiliating, spirit breaking and poorly handled. This is the same shit I've been dealing with my entire life - "where's your proof"?
Being a meticulously over prepared person by nature, I wasn't expecting to be caught off guard. I checked and double checked what was OK to bring into the grounds. We Ubered as close as we possibly could to spare me pain and energy (I have a limit). I did not know I needed any of these extra things to prove what was last night (and what has been this last couple weeks) visible: my disability.
If it wasn't my favorite artist playing I would have left.
I was so upset that I cried while limping to the main gate.
I cried while security watched us enter the main gate.
I cried when my partner was approached by the leader of the accessibility services team with bracelets to the accessibility area for concert viewing as a way to try to make up for our shitty start to the night. (???)
Things security suggest I do:
- Bring them my handicapped parking permit
- Provide a doctor's note
- Call my manager, a coworker or former coworker to corroborate my claims of being physically handicapped
November 11, 2014: I was pregnant and unable to walk to the Remembrance Day ceremony - that didn't stop me from paying respect.
I'm 30 and have had Rheumatoid Arthritis for 28.5 years. I have good days and bad days. My body has been at war with itself, literally eating away at joints from my toes to my neck (everything except my back is affected). Not only does RA wreak having on bones and joints, the three decades of drug use has killed my stomach, esophagus and organs used to filter said medicines.
“Emotionally, it takes a toll. It is a pretty unreal feeling to wake up and learn that every day brings you new life lessons about what you are no longer capable of. Like, “Oh shit. I guess I can’t use scissors anymore!” That’s my reality.”
Despite spending a lot of my childhood in hospitals (CHEO, SickKids and Hugh McMillan) I didn't grow up focusing on the things I can't do. I focus instead on the things I can.
I can use my voice to ask YOU the public and concert/festival/venue organizers to be better at not making people with a lot going against us feel like you're against us, too.
Please clearly post or state that in order to benefit from an accessible entrance or accessibility services, one must bring proof of one's disability. In my case, going home to retrieve proof was not an option physically.
Feelin the 10k Pain!
Could use a wheelbarrow today - Amnesia Rockfest was AWESOME (video blog to come). Walked 10k though, so I'm still pretty sore today (even though it's been two days).
Nothing like good exercise to stay healthy and mobile, but I definitely pushed my limits on Friday.
Should I do Rockfest next year, a hotel room is a MUST!
Here's a cute pic of me as a wee baby. I didn't walk to much as a kid. This was right around the time I was diagnosed with JRA (juvenile rheumatoid arthritis).
