I can’t just put my disability on hold

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For the last year or so, I have been basically living out of boxes.

Alyssa’s and my breakup took place right in the middle of my attempts to rebuild my office. I had to halt construction and rethink how to reorganize the smaller bedroom from being an office into being an office bedroom. Then as our actual separation approached, things were packed away and divided. I’ve been struggling for the past year to put everything back together; my room, my apartment, my life, myself.  ‘

Learning how to live on my own again, after seven years, and trying to figure out a way to make things work with suddenly half of my support – financial and physical – were gone.  I’ve somehow made it work, through the help of friends – which is to say I just barely managed to keep my head above water, but it cost me: physically, mentally, and financially. At a time when things should have finally started to get easier, what with my spouse at the time finding work, getting her residency, the blog being mostly stable and consistent, instead things have been getting steadily more difficult.

I looked into different resources and supports that are supposedly out there for people like me, only to discover something that had been becoming increasingly obvious to me since I first applied for disability. That even when programs are designed with disability is mind, they rarely take any consideration of the disabled person themselves, or the reality of what it means to be disabled. There’s this idea that we are somehow expected to be able to put our disability on hold until they’re ready to give us the resources we need to survive.

As I mentioned, I’ve been living out of boxes for some time now. The process of having to build all my furniture, figure out how to organize things in a way that makes them accessible to me, especially without the guarantee of someone to assist me, has taken a long time. Especially since in the middle of all this I still had to try and balance my time with trying to take care of myself and trying to earn enough money to be able to scrape by till the next month.

It’s a lot for anyone to have to do, but to make it more difficult, many necessary household tasks: like dishes, like laundry, are physically taxing enough to be nearly inaccessible. Doing my laundry would use up enough physical energy and leave me in enough pain, that I would likely be unable to do anything else for the rest of the day. You can forget about putting it away.

Despite the difficulty of trying to build my own furniture from scratch, most of the time entirely without assistance, I’ve gotten quite a bit done. I have a bed, a desk, including a drawing table, shelves, stairs that also double as both seating and storage. I’ve also managed to plant a garden plot, and part of my balcony, and unpack a significant amount of stuff from the boxes they’ve been living in, as well as doing my best to help others where I can.

There is a city service that exists to help people with navigating personal care with disability. They are supposed to provide assistance with household chores and tasks, essentially to help disabled people get chores done when they don’t have enough accessibility available to really do it themselves.

I applied for the service, and I do qualify, but on my visit, I was told that there was too much starting work to apply. It’s not that my apartment was entirely a mess. We had swept the floors, and organized as much as we could, but many things are still in boxes because organization not to mention actively lifting and moving boxes is something I struggle with. A few good hours with someone who can help with that kind of work, and I would be able to put most of these things away and have a significantly more organized apartment.

I was expected to have an already clean home to qualify for the home cleaning service. Since my inability to clean was imposed on me by physical disability, I am unsure how exactly they expect this to happen? I’m somehow being expected to be able to do inaccessible things until such a time that accessibility can be provided to me. And it’s not just me who faces this. Recently a friend suffered through a bout of illness making it more difficult for her to do the things she is usually able to do. The end result was that her home care worker deemed her apartment too much work, and so stopped giving the services they are supposed to provide.

So being unable to take care of things meant that the things they are never able to take care of suddenly don’t get done. They’re expected  to suddenly be able to do twice as much, just to be able to get back to being provided a service they require.

It doesn’t work that way.

It’s a lot like applying for disability support itself. The wait time on an application is potentially up to 3 or 4 years. Even if you somehow manage to get approved on the first go round, you are looking at several months of waiting. But what do you do in the meantime?

Disability Support will backdate the cheque from the date of application, but I can’t ask my landlord to wait a year for me to pay the rent. My grocer isn’t going to sell me food on credit. How do I survive in the meantime? If I’m too sick to work, that doesn’t just disappear while I wait to be approved by a committee. In some cases I might be able to apply for welfare, but the amount given to Ontario Works recipients is even less that what is given to people on disability.

The question of what happens in the meantime never seems to be fully considered. The idea that disabled people still exist even before they get the stamp of approval by some overseeing board seems impossible.

Often these oversights come under the supposed guise of “baby steps”. For example, laws regulating accessibility in building here in Ottawa, don’t become mandatory for builders until 2020 despite having been established long prior. The idea was to give builders the chance to gradually develop techniques and switch over to the new plans. Of course none of that is happening; instead, new houses are going up constantly, and all it takes is one look at the front stairs and the two storeys to know they’re not accessible. Older apartments that have been around since 1965 are not being modified to be able to accommodate wheelchairs or walkers.

To make matters worse, the few buildings that are actually accessible tend to be part of unaffordable developments, ironically pricing out the very people who need them.

What are people who use wheelchairs, or walkers, or other mobility aids supposed to do till then? They can’t just live in a place where they can’t get in or out. We can’t just turn off our disabilities until the world decides it’s finally not too inconvenient to admit we exist. So what are we supposed to do until then?

Baby steps may seem entirely reasonable, until you realise that some of us don’t have the option of compromise.

I cant just force my bones to regrow,

I cant force my body to stop having inflammation, the same way that no one can stop time and the aging process.

I can’t just learn to exist on sunlight and the morning dew.

I can’t just suddenly get the ability to walk long distances just because disability decided not to replace the batteries in the wheelchair that turn out to be non-functional anymore.

I can’t just put my disability on hold. None of us can.

So why does society keep expecting it of us?

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I can’t just put my disability on hold
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