Catch 22

Yeah! This week I got to interview a young woman who has been on ODSP for three and a half years.

I met Joan in the context of work done to improve diversity and inclusion in public education in Ontario. (Now that’s REALLY another story!) Joan is attractive, poised, articulate and thoughtful. Her main reason for being a recipient of ODSP is that she uses a motorized wheelchair and needs help with the cost of buying and repairing this and other accessibility equipment. These expenses can add up to tens of thousands of dollars a year – a prohibitive cost to any but the well paid in our society.

Joan has sought employment on a number of occasions and finds two sorts of limitations to this way of living. Her own physical characteristics make working in winter highly fatiguing. On top of this, access and transportation barriers are worsened by cold and snow.

However in summer months Joan has participated in a number of leadership and training programs, some of which were paid. Unfortunately, she says, none of them gave her access to the world outside of the “disability” field. She would like to, and has tried to, break into a world of contribution, even employment, beyond the “disability” realm but has been unable to find this opening. She has applied but never heard back from the places she applied to.

Joan volunteers 15-20 hours a week. She makes presentations about inclusive education, reviews and makes decisions about applications for specialized programs such as summer camp for children with disability labels, is a program advisor for a children’s rehabilitation organization and is a member of a committee that helps decide who will receive certain awards.

Joan told me that being an ODSP recipient makes volunteering possible in that it pays for her equipment and its repairs, plus her medications. Being on ODSP also makes volunteering, and the likelihood of finding paid work, harder in that she must continuously negotiate not receiving too much money for what she does. In fact she has turned down some opportunities because the level of negotiation that would have been required seemed too exhausting! Herein lies her Catch 22.

Joan also admitted that she sometimes lies and does not report every small stipend she receives. To quote Joan: “If I am honest about being reimbursed for my volunteering, it would get deducted from my ODSP and what is the point of that? Other opportunities open up, but I might turn them down because it would make things complicated. I would have to negotiate with them carefully and I am limited by the consequences ODSP implements around my making money.”

Joan went on to say that she has chosen not to try for some awards and honouraria because even if she received an amount like $5000 just once the explanations and reporting she would have to do are so onerous as to make it potentially too risky and so not worth the effort.

The problem in this arrangement as I see it is that Joan is also giving up two ways that would help her get to her goal of working outside of the “disability” field. On the one hand she is limiting her resume as she both avoids reporting some activities and avoids other opportunities outright due to receiving ODSP. On the other hand, as is well known in the employment sector, volunteering is a strong path to paid work, unless of course you are constantly limiting the scope of areas where you put yourself forward.

So here is Joan, ready, willing and able to work, at least in the summer – well educated, well trained, well known, already performing at employment type activities 50% of the week, skilled and experienced in many ordinary tasks of the NGO sector – and unemployed, poor and expecting to continue in this condition. And what is the persistent barrier? If she went to work for real she could not afford the cost of sustaining her wheelchair, her medications and transportation that was safe, warm and effective in the winter – (a wheelchair accessible taxi??).

I truly wish this was a unique story because then some sensible people would work it out with Joan and it would all be OK. Unfortunately Joan’s story is far from hers alone.
Judith