Please share about yourself, your experience with the Disability Assistance Benefit, and anything else you would like people to know.
I live in Vancouver. I am neurodivergent. I had an adverse reaction to an antibiotic in 2012 that has disabled me. I have a chronic illness that has affected my nervous system, given me Peripheral Neuropathy, Tendinosis, many connective tissue injuries that don’t heal, the inability to do anything repetitive without injury, food reactions that cause inflammation in my body, and lots of unexplained exhaustion.
I have loved music my whole life, but a hearing injury and subsequent Hyperacusis (pain from sound) took that away in 2017. So now I live in virtual silence, and need to protect my hearing both at home and in the outside world, which has become far too loud. Before the pandemic, my days of going to restaurants, theaters, venues, and visiting friends were long over. At home, my partner makes incredible efforts to not make noise around me and it has been very hard on both of us.
I have Post Concussion Syndrome, from which I suffer from cognitive and visual issues including light sensitivity, vertigo, dizziness, visual tracking problems, pain and strain from reading or watching screens, or reading anything in books or on paper. If I am visually overwhelmed, my cognitive ability to make decisions, concentrate, follow any train of thought, and even tolerate noise greatly diminishes.
My hands and feet are fragile from the antibiotics and limited to what they can do, especially anything repetitive. My mobility and ability to stand and walk is limited. For instance, I have trouble standing long enough to cook a meal, and my wrists aren’t strong enough to handle pots and pans, and the noise is excruciatingly loud when spoons and pans are set on counters and in drawers or when dishes clink together. I am constantly exhausted, and usually in bed. Overexerting myself one day can turn into days or weeks of recovery from pain and exhaustion. My daily, short walk outside is the highlight of my days, finding and naming the neighbourhood cats with my partner and bribing them with treats.
I used to play bass in a band. I played keyboards, guitar, drums, pedal steel, and any instrument I could get my hands on. I have a record collection full of Prince, Joni Mitchell, Stevie Wonder and so many other artists and bands. My life used to revolve around music, and I’ve found it hard to just drop music from my life, even though music physically hurts me now. I used to love going for drives, playing music in the car and bringing my camera with me to capture anything I found on the side of the road. I loved to walk everywhere I could, exploring city neighbourhoods and abandoned towns. I played sports recreationally, had plans to build an old truck, had worked about 20 different jobs in different industries, and was still figuring out my life. When I became ill, I had to completely reimagine my life and what my interests, abilities and future plans were because of the limitations of my body, and am still trying to learn more about myself as my health and limitations change.
Learning new interests and abilities, and working with my new limitations could be an exciting time if it weren’t for the anxiety and dread I feel from wondering where any support is going to come from. I am ineligible for PWD (benefit) because I live with my partner, but they have lost their job due to the pandemic and are facing the need to go to school, find a new industry to work in, keep us afloat, and take care of me all at once.
After years of declining and more complicated health, and being unable to work anymore, I decided to try to help out my partner with our financial situation and apply for disability benefits. It was a huge wake up call for me, as someone who hasn’t always been disabled. I thought people on disability were well taken care of. I believed in government safety nets. From a young age, I heard the rhetoric from non disabled people that people on disability or living on assistance were lazy freeloaders, that they were liars, and that it was some kind of easy way out of having to work. It’s hard not to internalize that.
Accessing and applying for the disability benefit has been difficult for me, as someone with a concussion and Hyperacusis. Not knowing how to find out about how to get help, it was a very arduous, difficult and tiring journey. I had to start with Google, pushing through hours of eye strain and screen time, just to navigate websites and try to find email addresses. My partner phoned around and sent emails for me when I was too overwhelmed, and in too much pain. We asked friends and advocates and organizations, limited during the pandemic, to what services they can provide. We were directed to do a lot of reading and sifting through government and disability organization paperwork before we were even allowed to make an appointment. (And those appointments were only by phone.) If I didn’t have my partner there to read through the information for me, and with me, I wouldn’t have gotten anywhere. For accessibility, disability advocates and the benefits system seem more purposely obscured than readily available for the people who need them. I soon found out that even the “Ministry” itself couldn’t answer some of my questions about eligibility.
For accessibility with the Ministry, I indicated on the DAB application that I wished to communicate with them via email. The harsh frequencies over the phone are painful to my ears. When they eventually contacted me, they called my phone instead. My partner had to call them back on her phone and talk to them for me. Having somebody speak for me due to a simple communication access fail feels dehumanizing, takes away my independence and autonomy, and leaves room for communication errors. There is also a dangerous potential for things to look like I can’t make my own decisions, because my simple communication needs are not being accommodated.
Despite being able to medically qualify for DAB, I cannot receive it because I am living with my partner. When they phoned (not e-mailed), they told my partner that I “shouldn’t bother” continuing with the application because my partner’s “income” would prevent me from accessing the benefit regardless. My partner is on EI because of the pandemic decimating the music industry, where they had worked for over a decade, and that industry will be the very last to recover, if at all.
According to the Ministry, the only way I can be in a relationship and qualify for DAB is if me and my partner make less than $18,000 in combined income per year on top of the DAB. That means that 2 people are expected to live on a maximum of $37,000 per year. I don’t know if we are also supposed to time travel to the 1950s where this was a liveable amount in a city like Vancouver, but should someone tell them I haven’t received my time machine in the mail yet? Disabled people can’t just go live in a small town where it’s less expensive, because of major accessibility issues and because there are not enough community supports or organizations.
So because I can’t get on the benefit, I rely 100% financially on my partner. I also rely on them to make phone calls for me because nobody accommodates hearing disabilities, including my family doctor. My partner has better things to do, and their own life to live, but we can’t afford to hire someone, because I don’t receive any financial assistance.
Here are some things that are extra, on top of living costs, for which I receive no financial assistance and are not covered by MSP. Therefore, I go without a lot of these things:
– A car, because I can’t walk far or stand on public transit, and the noise level is too loud and unpredictable.
– Supplements to keep me somewhat healthy
– IV therapies from Naturopaths
– Hearing protection and other assistive devices (noise cancelling headphones, earmuffs, earplugs, fl-41 blue light glasses and special prescription prism glasses for my concussion, soundproofing, grab bars for showers and bathtubs, dimmer switches)
– Food that is free from Gluten, hormones, antibiotics and additives, and is fresh and organic, to avoid major flare ups that put me in bed for weeks.
– Counselling and therapy for the stress that financial struggle and inaccessibility puts on my shoulders, losing my independence and dealing with the grief of losing my career and everything I used to enjoy.
– Expensive vision therapy for my concussion, provided by a Neuro-Optometrist, whose initial appointments start between $200 and $500.
– Physiotherapy for my tendon injuries which I sustain regularly.
The unpaid labour of my partner, instead of a hired aide:
– Making my meals, while making the absolute minimum amount of noise, which takes more time.
– Reading through complicated paperwork for me.
– Making every single phone call I have to make, and speaking for me, including personal medical appointments, because accommodating my communication needs is “impossible” for most businesses and service providers.
– Assisting me on walks in case I fall or injure myself or get stuck somewhere where there is loud noise and I can’t walk around it.
– Shopping for me in loud stores or places I would get too tired and overwhelmed.
– Keeping track of my appointments.
– Driving me to appointments.
– Paying for my food, shelter, medical devices, supplements, treatments not covered under MSP.
– Washing and putting away my clothes.
Every time you see “in a pandemic” replace it with “with chronic illness” or “with a disability.”
What do you dream support for people with disabilities could look like?
I want to feel like my life, well being, and rights are the same as someone who can work, or is not disabled. If $2,000 is the minimum amount each adult needs to survive, then I don’t want to be told I am an exception because I, like 25% of the population, have a disability, or because I happen to live with someone.
I want to have proper community care so my partner doesn’t have to have a second job looking after my needs. I want to be able to still live with my partner. Support would look like access to training for jobs that I am able to do, and then work as much as my body is able, or as much as I want to, while being able to also hire disability support services. If I can’t work at all, DAB should be there to cover my living expenses, as well as disability support services so that there isn’t any financial or labour burden put on my partner. The ridiculous income caps for partners are in great need of revision as well. I should be seen as an independent partner, not a dependent who financially limits my partner to the point of destitution.
In 2021, two people in a household cannot survive on one income alone. I want to be seen as somebody with lost income in my partnership, just like how able bodied people have been treated in this pandemic: every person that lost income, whether single or common law or married, received CERB. That includes multiple adults in one household.
If able bodied people are given $2,000/month because they lost their ability to work due to a medical reason (pandemic), disabled people also need $2,000/month because they lost their ability to work due to a medical reason (disability or chronic illness). The things that non disabled people have made accessible in 2020 are what disabled people have been asking for for decades. I know things can be changed quickly. I would just like someone to care enough to change them.
Likes / Loves:
Dark purples, dark greens, dark teals, and offensive oranges sometimes complementing those colours. The ocean, prairie thunderstorms, space, Jupiter’s moons, the sound of ocean waves, smushing my face in cats’ tummies. And of course, music.