I’m a 24-year-old disabled multidisciplinary artist and end of life care practitioner, currently surviving on ODSP (Ontario Disability Support Program).

I'm working with an extremely tight budget. My monthly income is about $1408. After rent, phone, and minimum payments toward debts and medical bills, I’m often left with less than $130 to cover groceries, transit, and daily living for the rest of the month.

I’m asking for support because I need relief from the constant stress of not knowing where my next meal will come from. The ongoing financial pressure is overwhelming, and I believe it’s significantly worsening my health.

Relying on painkillers daily just to be able to work is not a sustainable or healthy option for me long term. Despite years of effort, I have been unable to secure accessible employment. I’ve applied widely, continuously worked on my resume, and completed multiple professional development programs, but my disability and chronic pain remain major barriers.

I live with a chronic neurological condition that primarily affects my spine (see updates for more details). I have been in significant pain for as long as I can remember and experience multiple comorbidities. Due to medical neglect in childhood, I did not receive proper treatment, and now, in my early twenties, I am dealing with the long-term consequences of this condition largely on my own as it progresses.

I experienced significant abandonment from others in my life for needing time and space to adapt to my disability. Because of this, people from my upbringing—including friends and family connections—are not viable sources of support and haven’t been for a long time. The pandemic made my life and circumstances even more challenging, and I haven't really recovered that well since.

I've felt really lonely and isolated, living in a society that rarely empathizes or is compassionate towards people like me who suffer from rare congenital conditions. I just simply want to live my life like anyone else, give back to my community, receive an education and be happy. It is so hard to do that when I am in constant isolation and cannot get out of a poverty cycle.

I have spent my life leaving and protecting myself from abusive environments and have survived people and situations that would be way to overwhelming and sad for me to discuss write about here. Now that I am fully estranged from those dynamics, I’ve had to put much of my life on pause simply to accommodate the pain, limitations, and constant changes my body is going through.

My hands and fingers, feet and toes, legs, shoulders, elbows, knees, and other joints flare up in pain daily. Every day feels like pushing a boulder uphill just to manage and understand what my body is doing. At the same time, I have had to relearn how to be a functional person, how to care for myself, continue my training programs, and manage what I can of my freelancing work while living with constant pain.

I am currently unable to find accessible employment, and I do not have financially stable folks in my life who can help or other resources outside ODSP to rely on. For years, I have largely been surviving day to day on my own, trying to find a way to live with a bit more ease despite being below the poverty line and in chronic pain.

I do what I can to generate income more quickly by participating in market research studies, online surveys, and micro-tasks. However, this work is inconsistent, and when my hands flare up, I am often unable to use a keyboard at all, which makes even these options unreliable.

My physical disabilities, including collapsed arches, Chiari malformation, and syringomyelia, significantly limit how much I can walk or stand. This makes basic survival more complicated, especially when I cannot afford food or the transit needed to access a food bank. Alongside this, I am navigating complex medical needs and doing my best to stay emotionally afloat while healing and working toward more sustainable, accessible work in the future.

If you have made it this far, thank you so much for taking the time to read this. Take care.

Sumaiya