Not all disabilities are visible

People with disabilities are born that way–not necessarily.

All disabilities can be seen–nope!

People with disabilities receive all kinds of support from the government and community: Wrong again.

These are just a few of the major misconceptions that surround persons with disabilities daily. My life changed overnight and yours could too.

When I awoke on April 15, I never thought it would be my last day of work ever, that the previous week would have been my last day as a Girl Guide leader, that I would never be able to be involved in my community, that I would miss my daughter’s graduation and that so many everyday things I took for granted would become so difficult for me. Being a 51-year-old woman with an invisible and little-known disability makes the entire situation even more difficult.

The day after my final collapse at work, I had little concept of what was even wrong with me. All I knew is that everything was making me ill. The information I was given did not give me much hope: as the only real treatment was avoidance of the outside world and keeping your inside world pure and toxin free. This is no easy task. Pretty much every product I used in my house to clean and as a personal product had to be removed and mostly replaced with vinegar or baking soda.

In November of 2019, I was forced to go onto social assistance. I had been taking home over $3,500 a month prior to my collapse and now, on assistance I was earning $564 a month. How can one person with a daughter in high school survive on that? It was another month before I was able to see the specialist and get my disability designation, but was never placed onto the disability payment for social development. I was never offered a housing subsidy and had to fight for the tiny bit of assistance I received via my health card.

I went from able bodied and having a pretty good handle on my life with bills paid, a good salary, a social life and no real concept of what it meant to be disabled. All that changed overnight. I now had no real salary, bills were only being paid because I had savings to dip into, no more social life as I couldn’t go anywhere without having a terrible exposure and subsequent reaction. I had to stop my volunteer and community work. Even getting a coffee from my favorite coffee shop became problematic as the coating in take away cups had too many chemicals. And anywhere I went require me to be in a large mask–long before COVID began. Talk about being stared at everywhere I attempted to go.

This disability was life altering in every sense of the word. I went from a career to stuck at home living in a bubble. I went from having friends to having people who didn’t believe me because they couldn’t see or understand what I was experiencing. I went from being involved in my community to severely depressed in my living room. I had no idea where to turn to for help and there are simply not enough resources out there to help one mid life who becomes disabled, especially when it is an invisible and little-known disability. I needed to be able to survive financially, I needed to be a mom to my daughters, and I eventually grieved my old life and accepted my new one and realized I needed to become an advocate for all those in the same situation as I was.  This is where my focus lies today- advocacy for all disabilities, not just visible ones. All persons deserve to live their best lives and government cutbacks shouldn’t hurt the most vulnerable the most.

Shelley Petit is the chair of the New Brunswick Coalition for Persons with Disabilities.