So gay marriage is finally legal in the United States. I really couldn’t be happier. I’ve felt a profound sense of connection to queer culture since I was twelve.
That was before I was diagnosed with anything and was just this weird, complicated fucker who couldn’t fit in anywhere. Nobody could figure out what was wrong with me; I was just different.
That year my father took my sister and I to the Dyke March in Toronto. I knew gay people, but I didn’t know shit about queerness. We walked down Church Street, through the heart of the Village, and I saw every kind of difference. I saw joyful debauchery, unapologetic otherness, manic joie de vive.
And I was delivered.
I realized that if these people could find a way to be themselves and fit in and love themselves and each other, than I could find my place as well. Queerness became a promise to me: you too will find your great wide somewhere.
Years later I found out about disability culture, but in the meantime I was alone, and wouldn’t have lasted without that promise. Queer culture saved my soul.
As a result, I’ve always seen queerness and disability to be inextricably bound. So of course I’m ludicrously happy that gay marriage has been legalized in the United States. This has led me to think about a few things. The first thing I’m wondering about is when on earth disabled people will gain the right to marry or even pursue common-law relationships.
Now, granted, I’m legally able to marry at any time I want. There’s nobody arguing that my relationship is going to cause the collapse of society. Politicians aren’t trying to win elections by denigrating me as hatefully as possible. What’s happening is more insidious than that.
I want to move in with Hannah. Currently we both receive ODSP, which stands for Ontario Disability Support Pension. That’s a set amount of money you get from the government each month if you have a disability which interferes with your ability to work.
Two people who are on ODSP are allowed to live together with no financial penalty. However, if someone who’s on ODSP lives with someone who isn’t, the person on ODSP is presumed to be a dependent. They lose their ODSP money and become the financial responsibility of the person they’re living with.
Due to Hannah’s burgeoning career, she’s going to stop receiving ODSP soon. What then? Either we decide not to live together- to never live together- or I lose my benefits as well as my autonomy.
The third option is for me to get a job, which is profoundly difficult for me. That is, after all, why I’m on ODSP in the first place.
Here’s something else. Hannah requires attendant care to help her stay alive. Her attendants help her to bed and to the bathroom, and they also do the laundry, clean, and perform a lot of little duties that she’s physically unable to complete. Her attendants work for an organization which operates out of the building Hannah lives in. This theoretically allows for ‘round-the-clock-care, but because the attendants care for several other people in the same building, assistance at any given time is not guaranteed. If a couple of attendants are off sick, or aren’t working that day, and a couple other clients are being tended to at a particular time, and Hannah has to go to the bathroom, well, she just has to wait.
Hannah’s relationship with me has given her some amount of freedom. Now if I’m around and she needs something, she doesn’t have to wait. Her official attendants all arrived with preconceived notions about disability, and about what Hannah needs. I, on the other hand, don’t know a goddamn thing about disability except what Hannah has told me. I do what she says, she gets what she needs. It’s a great setup. There are a few problems with this, however. There’s shit I can’t do, for starters (like doing her hair) and also there’s shit that I frankly don’t want to do (like putting away laundry, though Hannah categorizes this as something I can’t do).
Fortunately there’s a program in Ontario called Direct Funding. It gives physically disabled people a set amount of money with which to hire their own attendants. In this program, attendants are generally given on-the-job training by the disabled person they’re working for, and so their skill sets become tailor-made to suit their circumstances.
This is pretty much what I’ve been doing for the last year and a half with Hannah, except I haven’t been getting paid.
Unfortunately, if Hannah hired me as one of her attendants, we would never be able to get married.
Them’s the rules: you can’t hire a family member to be your attendant, because I guess the government wants to prevent you from pocketing the money yourself.
This means that Hannah doesn’t get the opportunity to hire the only attendant she’s ever personally trained, and I don’t get to keep one of the only jobs I’m definitely qualified for. And I need a job, because pretty soon I’m going to lose my benefits.
I’m not sure where the government’s attitude about disability comes from. Unlike their attitude toward gay marriage, I don’t believe their feelings are based in antipathy. It could, however, be a simple lack of empathy.
Disability is easy enough for people to imagine: wheelchairs, ramps, white canes, hearing aids. Disabled people, on the other hand, are almost impossible for regular people to imagine. How do we live? How do we feel? What do we want out of life? It’s hard for people to envision this.
The tragedy is that our lives and feelings and goals are much the same as anyone else’s, and so it should be easy for people to empathize with us. It should be easy for people to support us. But the institutional support we need in order to survive isn’t consistently present. And the support we need to thrive isn’t there at all.
So when’s it going to happen? When will we be given the freedom our queer kin have gained? When will we be equal? And just what the hell are we supposed to do until then?
Note: I’m not the first one to be concerned about equal marriage. This blog post was partially inspired by two other wonderful blog posts about the subject. Melissa Graham, the activist responsible for Toronto’s Disability Pride March, wrote about equal marriage here: https://exposingableism.wordpress.com/2015/06/28/disability-the-final-frontier-for-marriage-equality/
The human rights activist Dominick Evans wrote about it here: http://www.dominickevans.com/2015/06/some-people-with-disabilities-are-prevented-from-getting-married-and-heres-why/