The box I refuse to live in

I’ve been working on this post for a while…


I’m up late working on one of what seems like hundreds of papers due at the end of the semester. The real number due at this point is more like six, but it feels like a lot more!

In ethics I chose to get involved in a group project on Christian ethics and disability. Right now I’m beginning to think this was a bad idea. I’m supposed to be writing the practical part of the paper – i.e. how parishes can become more sensitive and accessible to people with disabilities. Unfortunately, far from quickly getting through a paper on material I know a lot about, I’m stuck. My own stuff is getting in the way.

I’ve been writing this blog since 2005 and never openly discussed having a disability, although I’ve occasionally hinted at it. Perhaps it’s time to tell it a bit more like it is.

I have had a visual impairment that under US law is deemed “legally blind” since birth. I cannot drive, cannot read average size street signs, cannot catch a baseball thrown from anything but a very close distance, and cannot read the chalkboard even from the front row. I preach off my laptop where I scroll through sermons written in 36 point type. The same 36 point type is what I use to print out readings when I’m assigned as a lector in chapel. I can read much smaller type, but it’s pretty hard to project your voice while holding a piece of paper up to your nose.

It’s a bit more complicated than just trouble seeing at a distance. They include trouble with depth perception (stairs being particularly problematic), contrast, lighting, etc. What I can see in what type of lighting might be almost impossible in another type of lighting. Constantly changing lighting (strobe lights, emergency vehicle lights, walking through the dappled light of shade and sun under trees) can be so confusing as to be almost blinding.

So here I am, one of those folks that people like to label as the “least” in sermons, one of those folks that causes deep sighs as vestries argue over “damaging” the historical character of their buildings to make them more accessible, a member of a group of people that the government had to specifically require schools to educate.

I’ve experienced some pretty ridiculous things over the years. Bullying while teachers looked the other way in elementary school. Teachers who constantly “forgot” that I couldn’t see the board in middle and high school (to the point that I barely passed math classes – how do you learn math when nobody will help you see how a problem gets “worked out” in real time?) A small liberal arts college that struggled to understand that there are students who are good enough and smart enough to be admitted to their school – despite being disabled. (interestingly enough, Harvard and other Ivy League schools began making “reasonable accommodations” for students with disabilities in the mid-1960’s, yet other colleges somehow thought they knew better as late as the mid-1990s) An admissions officer at one school told me they don’t admit students like me – after admitting that my grades, SAT scores, and extra curricular activities were on par with their standards. Job hunting after undergrad was a struggle – finding an employer that was accessible without a car and wasn’t freaked out by having a visually impaired employee was a struggle. I discovered I was damned whether or not I talked about it. If I mentioned it people were freaked out, if I didn’t they were freaked out by something the law doesn’t allow them to ask about.

People ask me dumb questions. Complete strangers stare and say rude things. Without their help, I’d never know I couldn’t see things without holding them close up! It’s so helpful to get diagnosed in the line at the post office or grocery store. You’d be amazed by how many people think they’d better check to see if I “left my glasses at home”. (“No idiot, I have contacts. This is as good as it gets. Ever. You should see me without them. It’s even worse!”) [Note – sarcasm, which incidentally is a coping mechanism, is turned on all the way here!]

But in many ways it is what it is. I sometimes forget about not being able to see. My husband forgets about it. My friends forget about it. I’ve worked hard, damn hard to adapt, to find ways to get things done, to find ways to make things happen. After an adolescence where I was sometimes in danger of turning all the frustration and anger in on myself, I think I’ve turned into a reasonably stable, more or less mature 30 something adult. It was sometimes a long, dark road. And sometimes it was all fine. I gathered friends around me who got it. I grew up in a parish where it was just never an issue, where nobody kept me away from those moments at the credence table, cruets or ciborium or lavabo in hand, that I look back on today as powerful call experiences. I got some therapy for my toughest issues. I turned my experiences into a desire to find a calling where I could live for the other.

So here I am, two years into seminary. A postulant to the priesthood. Through CPE, through a year of field ed. Scheduled for candidacy interviews. I have been called extraordinary, courageous or inspirational by some, in weird, strange, uncomfortable moments that I do not enjoy or care to repeat. In so many ways I’m just a normal seminarian, with the usual weird middler angst issues, with growing anxiety about finding a job in a year, with a spouse and a dog and fantasies about how much better life would be if I had just 250 more square feet of apartment.

But tonight I’m feeling like anything but a normal seminarian as I research the Church’s work on making its life and worship accessible to people with disabilities. I’ve found no Episcopal seminaries with policies on reasonable accommodations in the academic information on their websites (never mind federal law!) I cannot not locate anything other than the tiniest passing references to bringing more people with disabilities into the ordination process (although we are apparently searching high and low for more young people to ordain). All I can find is constant evidence of an Episcopal Church that is so far behind that getting people in wheelchairs in the door is considered radical inclusiveness, and we pat ourselves on the back for “including” the disabled in lay ministries.


~ by Sophia on April 27, 2008.

2 Responses to “The box I refuse to live in”

  1. Well spoken and written! In my experience at Big Old Seminary to the south of you, they have been pretty flexible in terms of making accomodations for those of us with physical limitations, but I’ve gotta say it really felt rather like noblesse oblige when I was given extensions for the third quarter classes when I had been hospitalized. And if one more person says “I’m so proud of you!” I’ll slug them. A dear friend is also legally blind due to retinitis pigmentosa and is something of an activist on accesibility issues in the diocese of Your Nation’s Capital. I have never heard her so angry as when she’s told me of her frustration in some meetings for the committee that addresses disability issues. And after several years, she’s still getting comments about bringing her guide dog into church. It’s clear there’s still work to do.

  2. Just this Sunday we had a woman who was visiting for the first time and was in a wheel chair. There was really nowhere for her to be that she wouldn’t get trampled by the procession so they ended up putting her next to the pew at the front where the servers sit with her companion sitting somewhere else. It was very conspicuous. But worse than that is that our communion rail is not accessible. If you find any good info about making churches accessible I’d love for you to share it so that I can see if we can get some changes made.

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