My Time is Not Yours to Waste

I just wanted to go to the store, to pick up some things I needed. I decided to take my wheelchair. I won’t lie, I wanted to hatch some Pokémon. I also wanted the chance to browse the hardware store for some odds and ends I need to finish up my room. It was a treat for myself – getting the chance to explore the store more than is otherwise possible for me. I even arranged to borrow a bus pass.

Earlier this week, the temperature dropped and I am still adjusting to the sudden cool air. Additionally I hadn’t really taken into account how the speed of the chair, adds some extra wind to the chill. Either way, I made it to the station, and awaited the weekend bus.

Continue reading “My Time is Not Yours to Waste”

My Time is Not Yours to Waste
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Learn to Smoke Meat – Meet a Blogger

One of the tasks I set myself this summer was to get more involved with my local community. The stress of the last several years –  dealing with constant money anxiety, trying to find different ways of making money while managing my declining health, my declining health, the immigration process, the rapid and terrifying decline in world politics, – has had a significant impact on my mental and physical health.

Things got particularly bad last year when I ended up spending more than 3/4 of the year on steroids. I needed an outlet.

Ever since we moved into the neighbourhood, I’ve been coveting a plot in the Community Garden. During one of the walks I was taking with my new chair, I happened to run into some of the gardeners who have plots there. I mentioned this was my second summer of waiting, and they surprised me by letting me know that they had a plot available. That was the catalyst that led to me discovering the amazing programs that are happening right here in my neighbourhood.

One of them is a community Wood Burning Oven. Every two weeks or so, they build up the fire and they do a pizza bake. After that the fire is available for anyone to use to cook their own foods, including bread.

The whole group is really amazing, and I’m glad to be working and spending time with people so dedicated to creating community and building up community as well. They all do so much and have so much passions and caring, it’s just an amazing energy to be around.

One of the things they do is organize these great Community Kitchens: events where someone with a certain knowledge teaches anyone who is interested. The food, to a point, is paid for by a local community organizations, people get to try samples, and everyone gets to learn a new skill.

When they found out that I smoke meat, they were immediately interested.

Tomorrow, I will be breaking out the BBQ’s, and using them to teach people how to smoke meat. I’m also going to finally convert an old mini fridge I’ve had for 2 years now, into being a cold smoker! I’m really excited.

The event is taking place at the Bayshore Park Community Garden and Oven in Ottawa. It’s free to attend, just show up between 12 and 3.  I’ll be there working on the BBQ and possibly doing some art as well as time and weather and people who show up permit.

Come out and say Hello if you are interested!

 

Learn to Smoke Meat – Meet a Blogger

Dear City of Ottawa: Community Kitchens Help Build Communities

Dear Councillor Taylor,

I hope you are well.

My name is Ania Bula. I am one of your constituents living at the A_____ neighbourhood near Bayshore Park. This summer, the city has been working on updating the local Community Fieldhouse to better accommodate the needs of the neighbourhood. In consultation with local community organizations, the city was notified that our community would greatly benefit from having a full working kitchen, which in particular would include a separate handwashing station.  

It has recently come to our attention that the plans were modified by the city and that instead of the discussed kitchen, they are putting in a warming-kitchen only, which does not even include  the separate handwashing station. Continue reading “Dear City of Ottawa: Community Kitchens Help Build Communities”

Dear City of Ottawa: Community Kitchens Help Build Communities

Not Slacktivism After All

Blogging often gets criticised as being a form of slacktivism: a way of looking like you are participating in social change without actually “doing” anything.

There have been some great pieces out there criticising how this idea is ableist, classist, and I’m sure several other isms as well. Moreover, as someone who is descended from several people who participated in major revolutions, I am more aware than most of the awesome impact that words and writing can have in promoting social change.

Today however, I got to have physical proof that my writing does in fact make a difference. I received a call from an official at the City of Ottawa. Apparently my blog post about how ableism almost killed me last week, made its way to their Facebook page.

I was being contacted so that they could tell me that the sidewalk where my accident happened has had a concrete ramp installed as a temporary measure until they can replace that part in the future with a proper dip ramp that usually serve as accessible access to street crossings.

Because of my blogpost, that curb is no longer a hazard for other people like me. Not going to lie, that news made my day.

Not Slacktivism After All

This Chair Gives me Wings

Yesterday, for the first time in I don’t know how many years, I was able to experience nature that wasn’t immediately adjacent to a parking lot. I got to watch the sun setting gently as I made my way along the river and feel the wind in my face.

I can’t remember the last time I was able to spend that much time outdoors without being overwhelmed by pain.

Did I find some new magic med? Did I manage to reduce my symptoms?

Continue reading “This Chair Gives me Wings”

This Chair Gives me Wings

Make Canada Proud: Disable Genocide

[My dear readers, I come to you with a request. The following letter has been emailed and sent by mail to the Prime Minister of Canada, the Minister of Immigration, Refugees, and Citizenship, the Minister of Sports and Persons with Disabilities, as well as my MP. 

IF YOU ARE CANADIAN: Please post your support of what I’m asking here. That disabled Americans be allowed to immigrate into Canada and receive access to Healthcare as well as become a part of this great nation. 

IF YOU ARE AMERICAN: Please post in the comments about how President Trumps and the Republican Congress and Senates actions have put you or your loved ones at risk in the last few days. I will be including a link to this post in my email. 

ALL READERS: Tweet this to the Prime Minister @CanadianPM] 

January 28, 2017

Office of the Prime Minister
80 Wellington Street
Ottawa, ON K1A 0A2

CC: The Honourable Ahmed D Hussen, The Honourable Carla Qualtrough, Anita Vandenbeld

To the Right Honourable Prime Minister Justin Trudeau,

I’m writing to you as a proud citizen of this country to beg and plead for the lives of my loved ones. Since Mr. Trump’s election many of those closest to me have been scared of what the future holds for them. They belong to various vulnerable communities: trans people, gay people, people of colour, people who belong to non-Christians faiths or no faith at all, and especially disabled people.

In the days since President Trumps inauguration, that fear has turned into outright panic. In just his first week, Mr. Trump has enacted and encouraged policies that will lead to the deaths of millions. His policies show a clear movement towards eliminating the social and physical protections granted to those most at risk for abuse. Continue reading “Make Canada Proud: Disable Genocide”

Make Canada Proud: Disable Genocide

Not in Canada

CN: Police Brutality, Violence against Black and Disabled people,

Yesterday a black man with a cognitive disability was accosted and then violently beaten by cops. These days, it seems like every day brings a new story along these lines, except this time, it happened in Ottawa, Canada.

We unfairly and unjustifiably pride ourselves on being better here in Canada. I’ve even had angry people messaging me telling me I am being unfair and spurious in claiming that racist police violence happens here.

They had 5 cops against 1 man.

He was on the ground when they beat him with their sticks.

They beat him so badly, he may not live.

They beat him despite people in the area telling them he was disabled.

They beat him because they didn’t see him as human.

This happened in my city. This happened in a neighbourhood close enough to mine to be one I pass by regularly.

We need to start paying attention. We need to get off our fucking high horse and stop patting ourselves on the back, because better than the genocide that is going on in the US isn’t good enough. Because ignoring the genocides going on within our own borders because the body count isn’t going up as quickly as it is in the US, ISN’T GOOD ENOUGH!

WE NEED TO DO BETTER.

This happens in Canada, and turning away and pretending it isn’t happening is the same as condoning it.

UPDATE: Abdirahaman Abdi, the Somali-Canadian man who was violently beaten by cops in Ottawa has died. His brutal assault is now murder. May he rest in power, and may his family get justice for what was done.

Not in Canada

Open Letter to Prime Minister Trudeau and Premier Wynne: Legalize Patients

To the Right Honourable Prime Minister Justin Trudeau and to the Honourable Premier Kathleen Wynne:

My name is Ania Bula, I am a citizen of Canada living in Ottawa, and currently a recipient of Ontario Disability Support Payments (ODSP). I am also a registered medical marijuana patient.

I receive this prescription to help me manage the symptoms of moderate-severe Crohn’s disease. As a quick background: Crohn’s Disease is an autoimmune condition that affects my digestive system. Symptoms can take place anywhere from the mouth down to the anus. This condition causes my digestive system to become inflamed and swollen, which in turn causes it to be very delicate. During flares, the inflammation can be so bad that the lightest pressure causes the membranes to tear and ulcerate, causing blood loss. The inflammation can also cause blockages in my intestines that need to be operated, a loss of digestive ability leading to malnutrition, as well as causing severe pain, nausea, vomiting, and diarrhea. Needless to say, it is not a pleasant condition to have.

I have been treated for Crohn’s, in addition to other conditions, for close to a decade. The primary medication I receive is an immune suppressant by IV once every 6 weeks.

The prescription marijuana serves two purposes. The first is symptom management. Marijuana helps with pain and nausea control. Without it, many days are too painful for me to function appropriately. I cannot get out of bed, I cannot keep food down, I become malnourished and have to be admitted to hospital. Once there I am usually prescribe harsh steroids which, while helping minimize the flare, also causes damage to bones and joints already ravaged by this and other conditions.

Because I can take marijuana in ways other than through oral ingestion, it makes the pain treatment more effective. Frequently, the swelling in my intestines prevents more severe oral medications like dilaudid, Percocet, morphine, and others, not to work effectively. Moreover, the side effects of opiates can often mirror some of the same symptoms I am already dealing with like nausea.

I take small doses of marijuana throughout the day, which helps me get work done: either paid work like writing, or even just domestic chores like making dinner. For me, marijuana has been the thing that has helped the most when it comes to regaining some semblance of normalcy when it comes to quality of life. It has kept me out of the hospital on more than one occasion. It has helped me feel human again, when many of my conditions conspire to do the opposite.

In addition to symptom management however, marijuana also helps actually treat my condition. Studies have shown promising results when it comes to difficult cases such as mine. Many patients who have not responded to conventional therapies alone, have managed to go into remission when given the added treatment of marijuana.

Why am I telling you all this.

Recently, under the direction of Prime Minister Trudeau, the Canadian government has started the process towards legalization of cannabis. While this news makes me happy, there is a much more pressing issue facing patients that I believe could be addresses even before legalization can officially happen.

Medical Marijuana, ever since the new rules put forth by the Harper Government, is not covered by insurance. Not even that provided by ODSP.

The cost of marijuana is high. The standard dose of 1 gram per day can run you about $10 per day. For those of us with larger prescriptions, the associated cost is even higher. Often patients are forced to choose worse or less helpful strains in order to deal with the cost. My prescription can cost me up to $600 a month. As someone who lives on a fixed income from ODSP, that number is far beyond what I can reasonably afford. As a result I have had to go into debt to get my medication, borrow money from friends, ask strangers on the internet for monetary help, and sometimes make the decisions between groceries or my meds.

This is not a decision that should ever have to be faced by patients. Even if the mmj was only for symptom management, it would still be an essential part of my treatment. The increased stress surrounding the ability to get my medication also has negative side effects on my conditions itself, which are sensitive to anxiety and stress.

I am asking you to please help patients like me. To work to make our medicine a help and not an additional burden. Healthcare is, I believe, an integral Canadian value. We’ve built a national identity out of being the country that cares for its sick, and I am asking you to please continue that tradition. Help us get our meds covered. Help us not have to struggle to get treatment when already living on an extremely fixed income.

Sincerely,

Ania Bula

Writer of Young, Sick, and Invisible

Alyssaandania.com

Open Letter to Prime Minister Trudeau and Premier Wynne: Legalize Patients

Don't Make Me Pee In Your Fruitloops

It’s happening again.

Someone came up with a brilliant idea. Hey, why don’t we charge money for public toilets?

The reasoning is that by charging for bathrooms, the only people who will use them are people who actually have to go. Cut down on public sex, drug use, and raise money for the city all in one go!

Except?

Except this is just another example of how often the rights of the disabled are trampled over in the interest of “the greater good”.

What’s the big deal? It’s just a bathroom? If you can’t afford to use it, just wait till you get home?

Bathroom use is one of those interesting issues. On the surface we know that it effects everyone. One of the most recognized books in toilet training is literally called Everybody Poops. We don’t need to be socially convinced that people need access to washrooms. Where we make mistakes is in taking bathroom access for granted.

For the average person, if you need to use the bathroom, it is just a matter of finding one. You are able to devote a bit of time to looking for one, and if it takes a little while to find it, you are able to hold it in until you do. Chances are you have a restroom in your home and/or at work.

But some of us are not the average person. Some people are like me. Continue reading “Don't Make Me Pee In Your Fruitloops”

Don't Make Me Pee In Your Fruitloops

They're Taking Your Money and Giving it to Your Boss's Boss

The marketing campaign that made everyone fear deficits was a brilliant one. Politicians have been using that fear to fake economic policies ever since then, to the detriment of everyone. One of the favorite comparisons out there regarding the budget of any country is the one to the household budget. Different candidates wax poetic about the importance of living within one’s means and how the same rules must apply to a country and so forth and so on.

The idea of living within one’s means is one that often gets trotted out to “teach” poor people not to be poor, under the mistaken belief that the poverty is the fault of the people living within it.

Like any person actually living in poverty will tell you, it’s not really about not spending money you don’t have, but making sure that such expenses pay dividends. No one lives within their means, except for the very poor. For everyone else, there are credit cards, mortgages, financing, and so forth. All of which are examples of spending more than you make.

It’s the very poor, who don’t qualify for those loans, people on disability, on welfare, homeless people, who live entirely within their means because they don’t have the privilege of not doing that. Where the problem arises is that “within their means” does not equate to “while having the basic necessities needed for survival”.

Continue reading “They're Taking Your Money and Giving it to Your Boss's Boss”

They're Taking Your Money and Giving it to Your Boss's Boss