AJ

Please share about yourself, your experience with the disability assistance benefit, and anything else you would like people to know.

I live in West Vancouver, in a co-op, with subsidized rent. Thank god. I’m deaf and I have Cerebral Palsy and a rare genetic disease. Thankfully this disease is manageable by limiting protein. But I need to eat more often to maintain my energy level. I’m a mixed media artist painter. I love riding my trike! This is my life saver. I can’t afford physio therapy or massage therapy. I think I need the physio daily, but at 75$ a pop… too much. Plus, I’d love it if naturopathy was allowed as an option for good health.

Do you have enough money for basic needs, quality of life, independence, other needs like medical care, mobility aids, assistive technology?

None. I have to save my money to buy my own clothes and shoes. My absolute basic need of shelter and, internet and food is met, but nothing else. Everything else I have to save up for. The bus, I have the concession pass that I chose because I don’t ride the skytrain often. I’m very independent, within my means. Mobility aids, the government chooses for me, no options. I have an iPad that is generously provided by an organization that helps with communication.

I find the government is very strict with their form that must be filled out in full, every month. Some questions are downright humiliating, like is there a warrant out for my arrest. I had always wondered why they demand to know each and every single possible income I have – found out, so they can claw it all. I try to work as an artist. I recently had to re submit my information in order to keep my business. The person was demanding without friendliness. Said I must fill out a new form and submit a new business plan. This created stress. The government is a bully sometimes and it is a cold system with tiny compartments. Each compartment has no idea what every other compartment does. Really frustrating to deal with.

I live in fear with the disability amount. This is because the government keeps us poor on purpose. It’s legislated poverty. It’s allowed because that’s what society thinks of pwd. The Nazis did a fantastic job of dehumanizing pwd. I think because of that, we pwd are constantly degraded or put down and discriminated against. I bet people will just shrug their shoulders and say, “ that’s just how it is. Can’t change it.” Oh and why does the disability amount end at age 65? Our disabilities don’t magically disappear. But we do. This is because the money gets changed to federal money, the old age supplement, guaranteed income supplement and CPP all don’t equal the amount the province pays. I don’t look forward to turning 65 when I will live on even less. Because I’m a woman, even less. When I worked for Revenue Canada, I was shocked that older women receive $2000 for the year. I’m sure that increased since, but oh my god. So discrimination happens from cradle to grave.

Because I’ve been on the disability all my adult life , I don’t know what it’s like to be independent of the behemoth the government is. So I don’t know how my quality of life is. I know it could be better. Because of the Coronavirus, my life has come to a grinding halt.

I have to go without needed physio therapy because I just don’t have the money. Plus the government cut how many times they allow it. It used to be once a month, then it became ten times a year. I need it weekly or daily. I also need massage therapy. I go without these. I do my home exercises, but these need updating.

Living on disability is heartbreaking. I see my peers go on wonderful vacations around the world. I am stuck at home, forced to be content with being an armchair tourist. It’s embarrassing to say no to events that cost a lot. Why are things out of reach for pwd?

I’m always confused when I hear a person with a newly acquired disability complain. I myself am tempted to say, “that’s how it is.” Society needs to accept pwd as equal. That would be a start.

What do you dream support for people with disabilities could look like?

I believe everyone is equal. End elitism, stop talking down to pwd. No more brushing us aside and pitying us. Stop seeing us as a liability and a loss of dollars. We are assets and resources .

I’m sure there’s more..

Likes and Loves:

I love purple. There’s not enough purple in the world. I love riding my adult trike. I miss my two cats, Panther and Rumbles. Both were gorgeous black cats. I like horses and dogs. I enjoy taking pictures when I ride my trike. Sometimes if the weather is decent, I will bring my sketchbook with watercolours and / or my chalk pastels. I often visit the library to drop off and pick up DVDs. I also like unicorns and the winged horse, Pegasus. I’m spiritual but can’t stand religion and it’s small mindedness. I enjoy meditation. I love moss. If I earn my own money, enough, I will move to a place and build furniture with moss. I think that would be super comfy. Grass is ho hum. I don’t lead and I don’t follow.

See A.J.’s art at www.handsandpurrs.ca , her Instagram account, or Facebook page.