“I could never live the way you do.”

I get that a lot. It’s not usually about the wheelchair I use, though that’s certainly part of it. 

Rather, when my able-bodied interlocutors express their shock and dismay about the state of my life, they’re talking about my use of what is rather euphemistically called “attendant services.” 

To put it bluntly, I am what every parent who has a child with a disability hopes to avoid: the kind of person about whom doctors say “she’ll never live on her own.” I need help with the things most people never think about: getting dressed, making meals, and using the toilet being just a few.

I do live on my own. I just require a large staff in order to do so. I am lucky enough to have access to that large staff, at least right now while I attend graduate school. 

But many people across the country in my situation do not, or at least not enough of what they need to make a meaningful life. 

The only thing worse than needing a stranger’s help to use the bathroom is not having that stranger there. 

The paucity of care hours from agencies available as well as the lack of assisted living or supportive housing spaces means that many people do not have what they need when they need it.

The options for care outside of nursing homes are limited. People can hire from care agencies, which are funded to a certain extent by the government. But almost never to the extent the client needs. When I wanted to leave assisted living and use an agency, I was assessed as needing five hours of help a day; I was offered 14 a week.

This option does not generally offer much flexibility or autonomy, as case managers, not the clients themselves, decide what is appropriate care, and you have to already be living in a space that is physically accessible.

Independent living or supportive housing is considered the standard. 

But there are degrees to the independence we’re granted. The independent living movement blossomed in Canada in the 1970s, when people with severe disabilities moved out of institutions and into assisted living facilities where they could have more say in their own lives. 

This is more or less the model that still exists today. Attendants are employed by the facility to work there, but clients direct their own service and live in their own apartments in the community.

Decades after independent living was first introduced, it’s generally accepted that a model of care in which a client has control over her services, however that works, is best. But it’s still a long and arduous process just to find a place in supportive housing. 

In Ottawa, I am told it is an average of eight years, and it’s similar in other cities such as Toronto. Having been on the waitlist for supportive housing for several years, I tell friends it’s like getting an organ transplant: you don’t wait for someone else to move; you wait for them to either become too ill to live on their own or to die. 

Once you do get a place, it’s very hard to move if you don’t like where you’re living, so moving for personal reasons, such as a job, isn’t usually possible. You have to start over again on the waitlist and a job won’t wait five to eight years for anyone. 

Because it is so difficult to get into one of these apartments in the first place, it’s even harder to fight for autonomy once you have one. Clients in a setting like this have very little say in who is hired to help them do the most intimate of tasks.

Although technically clients direct their own services, often it can be regimented and scheduled to a degree that makes living one’s life a constant juggling act.

But in Ontario, as well as in other provinces, there are few other options. 

A program called Direct Funding exists, where the government will help pay for people to hire personal care attendants of your own choosing. 

In this situation, you still need to find your own physically accessible place to live, but it means you have the freedom and flexibility to do things like travel or live with a partner, not generally an option in supportive housing.

But the bar to clear for this kind of assistance is high. 

You have to prove you are capable of acting as an employer, and the waitlists for it were until recently even longer than those for assisted living.

The provincial government recently gave this program several million dollars worth of funding, but it will be a long time before we can see if that will meet the demand.

I am grateful to be living in a time where I can complain about the lack of options because it means there are some. 

Forty years ago, someone like me complaining in a paper about how her care makes it hard to hold down a job or build a life with a partner would have been laughable, because I would have had neither job nor partner nor access to a platform like this. 

But progress hasn’t come far enough.
I deserve to think about how I’m going to get dressed in the morning as little as you do.