It’s Thursday the 18th at 4:30AM. We’re home now. But earlier today my family and I went to a warming center.
It’s in a church and the staff were very nice and welcoming. There was homemade food and lots of snacks and drink.
Again Im setting to write chronologically but my mind feels fragmented. I can’t sleep and I’m so cold still.
We were able to charge up our phones and back up battery. Another family was there and they were very friendly.
Maybe out of the five staff, 2 were wearing masks. The cold from the past few days has been wreaking havoc on my body. I think I’ve also been close to hyperthermia.
Very few of the other families were wearing masks. TJ was set up on an air mattress but they had a hard time sleeping. Their 5 equally friendly dogs were with them.
I was on a cot. I spent about three hours on it. Tossing and turning, trying to get comfortable. It wasn’t very warm by then. But it wasn’t as bad as home. My back and neck are so stiff. I realized, do they even make things like this for the disabled?
One of the staff came in and asked if he could lead us all in a prayer. I whispered to Vall to just bow their head. I reminded them not to say we’re atheists. We bowed our heads. Because old habits die hard when the prayer was over I repeated amen and did the sign of the cross. That was amusing.
I can’t keep writing. My fingers are colder than ice.
We drove back home slowly because lying in that cot was going to cause me more harm than good.
Well, I figured I would start writing again but I didn’t think it would be about a winter storm in Texas. Like I mentioned in a previous post, TJ and I moved to Texas not too long ago.
I wanted to write chronologically but I’m going to listen to my body. My stomach is currently audibly grumbling. We finally had hot food a few hours ago after almost three days without. We’ve been eating snacks. We have food but it is perishable.
Once the power was cut, the water stopped. I think the pipes froze. We kept the faucets open as per guidance to prevent burst pipes but alas…
I take about 14 medications a day and haven’t been able to take them regularly because I need to take them with food. The snacks we have are running low. We (slowly) drove around yesterday looking for food. No luck.
Today we called around for hotels but they’re price gouging, or not accepting pets. My cat is part of the family. If he isn’t welcomed then neither are we.
This morning I woke up so stiff, I could barely walk. Chronic pain and cold weather? Not a joke. My wife and daughter were in the car, warming up and charging their phones. NOTE: we are able to do this because we’re in our complex’s parking lot. DO NOT do this if you are in your own garage or similar confined space. Carbon monoxide poisoning can be lethal.
We have a fire place but being from the projects in NYC I don’t know how to work them and I don’t know if it’s even safe to have it on.
My cat, who is usually very aloof, is sleeping on my lap. I’m currently under two big blankets and have a scarf wrapped around my head and socks on my feet. I’m still cold. My stomach continues to grumble.
We finally were able to get flashlights and so tonight should be easier. We’ve been using our phones but not much because we want to try to conserve battery.
I saw some Northern jackasses think it’s funny that -sorry, stomach again- Texas is cold and powerless.
You hate the politicians, not all its people.
When you make jokes like that you aren’t hurting Ted Cruz. You’re hurting poor people and BIPOC who are suffering the most right now.
Anyway, my daughter TJ just called me from the warming center. They don’t want to come back home. And I don’t blame them. Not having water causes sanitation issues. For example, we have two bathrooms and the apartment stinks because we haven’t been able to flush.
Because we have no water we can’t shower and because we have no power we can’t boil water either.
Things are miserable. But I know they could be worse. But just because other people have it worse than I do does not mean any of us should suffer.
As of this writing, at 6:32PM central time Wednesday February 17th 2021, we have been without power for about 55 plus hours. We are expecting more winter precipitation. We should finally hit close to 60 degrees on Friday. But can we last that long? Me and my family? Yes. It’ll be hard. I will continue to complain but yes we will live.
Our homeless and more vulnerable neighbors? I don’t know but I am not optimistic. And given the way local and state government have handled any if this so far, well, they don’t inspire confidence in me.
Check in on your neighbors. Donate food and money when you can. If you have special skills for this type of weather volunteer if possible. Let’s try to help each other.
I’ll keep updating and hoping this is all over soon.
But in the past 6 months things have gotten so much better! I moved! Yup, I left NYC for the South and I gotta say I kinda love it here. I’m much happier and less stressed.
I also got married. It’ll be 6 months soon. My wife is amazing. She’s just everything I could ever hope for and more. As an Atheist this is silly, but I call her my miracle. Cheesy but true. Before her I didn’t think love like this could exist. Kind, patient, loving, SAFE.
But it is possible. And I’m so grateful. TJ is thriving and doing better than they had in a while.
The reason I’m writing this is to ask for your help. My wife would love to adopt TJ. TJ would love for my wife to be their new second parent.
As I’ve mentioned, I’m disabled and I worry that one day I will not be able to properly take care of TJ. My wife helps with all that she can but when she’s taken TJ to appointments because I was ill, they called me to verify that my wife could make decisions on my behalf. If something were to happen to me, legally my wife wouldn’t have any rights. I fear TJ would end up in the system or with their biological father.
I have written about Jekyll before (see links above) so I won’t rehash it. While he is willing to sign the paperwork necessary for this process to continue he is insisting we do it all through court. He could just go get some papers signed in front of a notary but I guess he just doesn’t trust it.
So here we are. I’m asking for your help in covering attorney and adoption fees. All the relevant information is in this link to the Gofundme.
If you are able to help financially, please do. If you are not, sharing the fundraiser helps a lot too.
Thank you for your time and for reading my posts. I hope that now that I’m in a better place (in every sense of the phrase) I can come back to writing more regularly for Mandesty and general social justice posts.
Much love and peace to y’all. Stay safe out there.
Sunflower Punk aka Alex R.
Ohana means family. And family means no one gets left behind or forgotten.
Back in 2016, a friend and former professor of mine was faced with housing related discrimination because of her disabilities. Threatened with eviction, she was forced to go into debt in order to avoid homelessness.
A complaint was filed with the Ontario Human Rights Tribunal over their refusal to accommodate her medical disabilities.
Unfortunately, the cost of justice is high. She’s raising some money to cover just the legal fees to date. Her situation is already difficult because of the cost of saving her home, but to add to it, she is one of the many who saw a massive cut to their pay thanks to the actions of Doug Ford.
The sad reality is that while the courts seem like an option for confronting obvious acts of discrimination, for many of us with disabilities, the cost is too high. Many of us have stories of illegal acts with regards to employment, or housing, or even just existing, and yet for too many of us, our only option is to swallow it. Justice is for sale.
If she is unable to raise the funds to cover the costs incurred to date, the case will be dropped which means she will have no recourse for getting justice. What’s more, the particular people involved in the acts of discrimination have other disabled people under their purview, people who will be directly impacted by the results of this court case which would send a negative message over whether disabled people have a right to have shelter.
If you are able and willing, consider helping out. For those of us who want to help but can’t afford to, a big help is making sure the fundraiser gets seen through lots of sharing to various social media. This is a great person who honestly deserves all the help she can get.
If you’re the member of any sort of minority, chances are you’ve run across this. Some friend, family member, or vague acquaintance ends up in a situation where they are confronted with their own inherent biases in some way, and they feel the need to run to you as the Representative of Minority Co. to explain the situation.
For example, imagine you have a friend name Betty who is the owner of a small business who is hiring someone to work as a part of that business. She has narrowed her choice down to two ideal candidates, who are identical in terms of qualifications. Both have the right amount of experience, the same great attitude and personality that fits into the team dynamic, in terms of “reasons to hire” the two are completely interchangeable. Except that Candidate A is abled while Candidate B is disabled.
Now Betty is not a Capital A Ableist. She knows that disabled people are just as capable as abled people, she truly believes that the world should be accessible, and has all the empathy for disabled people having a difficult time being able to find gainful employment. Betty has signed countless petitions to make accessibility more prevalent, her own brother even has a disability. Betty is an ALLY!
But Betty’s business is small, and even with the added help, she is hopelessly overworked. Candidate B’s disability will require the company to undergo some work to make it completely accessible. Maybe, it would even cost her some money to get some needed program or service, or to make some changes to the physical location of the business. She was already putting pressure on her budget by hiring a new person, the added finances would be just too much. She would have to close up shop, and it’s not really fair to her or to any of her other employees, or to her family, to jeopardize her business for the sake of one person. If they had been better qualified and the best option than of course, it would be no question, but the two candidates are completely identical and really it’s a coin toss one way or the other. Wouldn’t it be just as unfair to Candidate A to only not hire them because they’re not disabled? She makes her choice and then next time at dinner with her brother’s she lays the whole story out and asks:
Ford’s government recently proposed a series of cuts to what is covered by OHIP in the provincial budget. As justification for him depriving the population of Ontario of adequate healthcare, in particular those who happen to be poor, on social assistance including disability, or underage, were the claims that a significant portion of tests are unnecessary. He went on to claim that less than 4% of family doctors are responsible for ordering over 40% said tests, in a demonstration of how statistics and a lack of understanding can be used to obfuscate the truth.
Let’s start with the latter claim. While it may seem strange that such a small percentage of family doctors may be responsible for so many tests, it’s less surprising to those of us who deal with chronic illnesses.
After publishing my last article about Ganjahnista’s, shit really started to hit the fan.
I went to visit my medical dispensary and found out that despite a COURT ORDER ordering that medical dispensaries be allowed to stay open until the court could rule on whether they provided a necessary service to patients in accessing their medication, Police had started raiding and shutting them down. They claim, contrary to the truth, that in light of legalization that it meant the court order no longer applied. This is patently false since the court order was specifically in anticipation of the court case, and stands as long as the court case stands.
The fact the police are outright lying or so completely unaware of the law, that one wonders how they expect to enforce it, is done at the behest of conservative pressure. Have to make sure the government pot shops don’t have any competition, especially when they’re trying to get away with charging $500 an Ounce. Their illegal crackdown jeopardizes the H.O.P.E project previously mentioned, and even in just the 24 hours since it started happening, there were reports of a rise in overdoses and ambulances responding to calls all over the city.
I’ve since found out that despite being open for years with city approval, the Police have also shut down Ganjahnista’s. Not only is this another patient safe space gone, but I had also JUST arranged to have some of my artwork on display there on consignment so that’s all gone now possibly.
One of the interesting side effects of living with a first-year university student in what is essentially pre-med, is that occasionally I get asked input on issues related to the medical system. One such topic that came up was digital technology in medicine and it’s impacts on patient health and care.
Hey, wait, I’ve got something for this.
Immediately my mind went to the MyChart system that the Ottawa Hospital used back when I lived there.
The MyChart system is basically an online portal that allows patients who register for it to access their chart online. It’s not complete, but it contains notes on any tests run in the hospital network. The part that was most useful for me however, was the fact that it let me access up-to-date blood test results when I was in the hospital.
One of the realities of being a neurodivergent woman with a chronic illness, is that I have to navigate a prejudiced medical system. It’s not uncommon for certain symptoms to be taken less seriously when they present in women, a part of the medical systems pathologizing of either having a uterus or being a woman. These symptoms can include among them, abdominal pain and iron deficiency, two major aspects of Crohn’s Disease.
In addition, frequent hospitalizations that result in being given pain medication means there is always a risk of being mistakenly perceived as a drug seeker.
All these things put together make hospital visits not only very stressful but inconsistent with regards to quality of care and treatment. The worry of course is for something serious like a blockage, fistula, or abscess being missed because the doctor assumes you have a low pain tolerance or thinks you’re trying to score. Not to mention being in severe pain is both unpleasant and also not good for your health. Continue reading “Medical Records, Digital Technology, and Empowering Patients”→
Whenever the discussion of the struggles people on ODSP deal with come up, there is always this underlying idea that the people in charge of making the decisions don’t know exactly how bad the situation is.
While there is some truth to that, in that they don’t understand on an emotional – have lived through it – level of what it’s like, the truth of the matter is that it’s not unknown to them as we might like to pretend. That thought hit me this month when I received my January Check a week early, just before Christmas.