He's Blind. I Married Him Anyway.

Written by: Connie Kuusisto

Note to reader: I had written this post back in January and was thinking of submitting it for use on this blog. Then I read Laurie Rubin's terrific post, Two Invitations, and realized now is as good a time as any to follow up with mine...

The world is full of perfectly lovely, well-intentioned, but in some ways, clueless people. Admit it. There are people in your life who, as much as you care for them and they you, could use a little "disability awareness" training. There are also people who are ignorant. And there are those who are just plain mean. I won't make the claim that I've "seen it all", but as a former guide dog instructor / manager of admissions at a highly regarded guide dog school, I've seen and heard plenty. As have you I'm sure.

A few years ago I was asked, as a member of a local women's group, to be on the nominating committee for the next year's "officers". I was the youngest person in the room. I was, I'm pretty sure, one of the two youngest women in the entire club. I'm talking decades here. I assure you the other women in the room did not attend school in an age when children with disabilities were "mainstreamed" into public schools. Nor had they ever given much thought, I'm sure, to the concept that they themselves might only be temporarily "abled". Time was no longer on their side..

Before the meeting started, I was enjoying small talk with one perfectly lovely woman; I'll call her "Alice". Alice eventually revealed that she had heard from "Betty" that my husband was blind. Really? Can he see anything? Does he work? Well how does he get to work? Really? How did he go blind? Really? Was he blind when you married him? OH REALLY!!

Well it just so happens that my husband is, among other things, a talented writer and I'll take any opportunity I can to plug his book "Planet of the Blind" (including this one!). So I gave Alice the particulars and suggested she ought to read it. "Oh isn't that nice. Oh I will read it! Thank you for telling me about it...." And then, just as we were being interrupted by the announcement that the meeting was coming to order she said, almost under her breath, "So. He's blind and you married him anyway...." *Smile* Alice fell into the "perfectly lovely, well-intentioned, but in some ways, clueless people" category. She didn't mean to sound insensitive. I know she didn't. She's far too nice.

Is that what people think? Was this sweet little grey-haired old lady just voicing what everyone else thinks? Oh if they only knew. To quote Ralph James Savarese in his soon to be released book: Reasonable People: a Memoir of Autism and Adoption, she "underestimated what a relationship is, conceiving of disability only as deficits."

You see, I was married once before. I call my ex my "insignificant other". My insignificant other could see just fine. He could mow the lawn in straight lines. He could drive to the corner store for milk. He could change the oil in the car and make sure the tires were inflated properly. And I'll say it hear and now, he was the neatest roommate I've ever had. On Saturday mornings we'd do housework together. Let me tell you, he was meticulous. Not a crumb could you find in the kitchen. Not a Labrador hairball could you find on the floor when he was done. Oh he was fine in that regard! Oh, but if only he could have been a friend. If only he could have been loyal.

Several years later I met Steve. My two young children didn't seem to notice he was blind. My parents met him, liked him immediately, and didn't care. Neither did my friends. Most of them had been guide dog trainers too. We had a small wedding ceremony in Jamaica. We call it our "family-moon" because my children and all four of our parents spent most of the week there with us.

So here we are ten years later. Steve can mow the lawn, but I prefer it when he doesn't. I like a lawn to look mowed when it's done. I'm fussy that way. Steve can go to the corner store for milk - he walks. It's too close to drive anyway. I should walk there with him. It's true, he is not the neatest *roommate* I have ever had. He fails to see the crumbs on the kitchen counter and yes, what with three dogs, more often than not there are Labrador hair tumbleweeds everywhere, even after he vacuums. I am fussy. But that is my problem, not the fact that my husband can't see. I mow the lawn now, but in exchange for taking on that chore, I've got a true friend. I've traded crumbs on the kitchen counter for loyalty. I've left the life of a single Mom behind for a life of adventure with a man who's taken me to San Fransisco, Jamaica, London, Helsinki, Milan, Venice, Hawaii...

As for Steve, he traded his days as a bachelor for life with a fusspot and her two teenagers. Can you imagine? A fusspot and not one, but two teenagers!

Yes, Steve is blind. And borrowing these words from Jane Eyre: "Reader, I married him."

Cross-posted on Planet of the Blind

Meet Columnist Laurie Rubin

Laurie Rubin is a mezzo-soprano who has sung at The Kennedy Center, The White House, and Carnegie Hall. Born blind, Ms. Rubin has always advocated for people with disabilities. She serves as Director of Curriculum in PWdBC' s Summer Institute of The Performing Arts. You can visit her personal web site at http://laurie-rubin.com/.

TWO INVITATIONS

Written By: Laurie Rubin

Before my Bat Mitzvah in 1991, there were several preparations that needed to be made. My mother and I spent a better part of the year making arrangements. We planned the menu with the caterer, we went shopping for the perfect dress, we organized people into tables based on who they knew, who they'd get along with, etc.

Though we spent a majority of our time and energy planning the celebration itself, one of the most significant things for us to do was to create the invitations. This would be the first thing people would see. It would be a glimpse of what was to come, the hard work I had done to learn the prayers and lead a service, my first step into womanhood, and a heck of a party we were going to have afterwards.

We hired a calligrapher who spent lots of time explaining the different invitations and their backgrounds. Once we had settled on one, she began to write out what we wanted printed on the invitation. With tremendous skill and detail, she turned the words into art, and the simple sentence, "You are invited to the Bat Mitzvah of our daughter Laurie Gale" took on a colorful and rich meaning.

It is now 15 years later, and today, I received an interesting phone call from my mother. She informed me that my second cousin was about to be Bar Mitzvahed, and that we were invited to the celebration. The invitation read, "To Lilly Rubin and Guest, Brian Rubin and Guest, and Laurie Rubin". I was taken aback by what I had just heard. My mother had been invited with a guest as she was now divorced and expected to be dating; my older brother was invited with a guest. Yet I, almost 30, was not expected to bring a guest. Oh sure, if I had mentioned I would indeed be bringing a guest to the parents of the Bar Mitzvah, they would have been happy to welcome them. However, the initial assumption that nobody would be attending with me, and that I would simply be joining my other coupled family members was like a glass of ice cold water being splashed on my face.

I now had tangible proof on paper of something I had always suspected, that I as a blind woman I am not seen as a viable mate. My acquaintances and relatives would not think to set me up with their dear friend's single child. Believe you me, I was always happy to be exempt from such an uncomfortable exchange. Being forced on a blind date with an equally unenthusiastic person never appealed to me. My poor brother got such a proposition from friends of my parents several times. Part of me felt invisible knowing I was never thought of as a woman who wanted to have a family and to care for a life partner.

I hear similar stories from other blind people. They often tell me that they have joined some on-line dating websites along with their sighted peers. They tell me they feel like magicians because as soon as the blindness is mentioned, their prospective matches perform the most incredible disappearing acts every time.

"Why is this so?" you may ask. "What is wrong with a blind partner?"

My answer is in between the lines of two invitations. The fancy curlicues of the writing, the satin finish of the paper, the words, "You are invited to our daughter, Laurie Gale's Bat Mitzvah" made me feel my budding womanhood, my growing interest in loving someone, in noticing my own body and mind flourishing. The possibilities in life seemed endless. I also really enjoyed picking out the invitation and deciding its style because though I can't see, my understanding of things that are visual makes me feel creative, and helps me express who I am. It is also the side of me that made me become a jewelry designer, and someone who loves to play with make-up and shop for funky clothes.

Those who know me admired the calligraphy. The people who understand me realize that I and other blind people are great friends, great at our fields of expertise, have a lot to contribute in life, and that we would make great life partners.

As I went through the difficult years of high school, I ran into a lot of people who subscribed to the likes of the invitation I received today where Laurie Rubin, sans guest, was invited to a celebration where it is expected that everyone else would be bringing their significant others. People expect their partners to take care of them physically as well as emotionally. Their image of blindness is of the person they become when they're fumbling in the dark frantically for their glasses. They are not familiar with the blind person who is well seasoned, well traveled, and well adapted.

The juxtaposition of these two invitations carries over into the work place. In a twenty minute interview where the employer is so interested in a person who can best get the job done, all they often see in a blind applicant are the intimidating questions, "How will he use a computer? How will she get to work every day without being able to drive? How will he find his way around the office?"

One lady I know who is a social worker told us about the hard road she traveled when looking for her first social work job. She had gotten incredible grades in college, had gotten glowing recommendations from the people she worked for during her internship, and was really destined for a rewarding career. She said she would never forget her first interview which was very
uncomfortable. Because of her social worker's intuition and talent for putting people at ease, she gently confronted her interviewer as she could tell he had some discomfort with her. At that moment, she said she heard the sound of his leather chair as he readjusted, deciding how he was going to put what was on his mind. After a pause, he said, "I' not sure how you will fit in around here. How will you even find the bathroom?"

So here was this poised young woman, ready for success, and all the prospective employer could see was a blind person. She has since found many wonderful positions, is happily married, and has a teenaged son.

As a jewelry designer, classical singer, and writer who happens to be blind, it is my job to provide people with a multi-faceted image of a blind person. It is my pleasure to educate people one by one as they see me walking independently with my guide dog and do mundane things in my every day life that they would never expect from a blind person. It is my privilege to have been born blind so I can feel the joy of seeing the lights go on in people's heads as they get to know me as a person in my work life and personal life so that I can make things easier for those in my situation who will come after me.

Preparing the invitations for my Bat Mitzvah that I would send out to the guests was full of that same creative energy I want to send out to the world in expressing myself as an individual who is so much more than blind. With more invitations like mine being sent out, I think we will see fewer and fewer of the kind I received today.

While on the phone, my mom and I had a good laugh as we do over many little things in life. She pointed out how ironic it is the two unattached people, my mother and brother, were invited with guests, and that I who am living with my life partner was invited without a guest. The most important thing in life is to be able to laugh at something like this invitation, to have a wonderful sense of humor about yourself, and to enjoy life with all the stuff it brings you.

The Cookie Incident

Written By: Laurie Rubin

Two years ago, I met with a job placement counselor at an organization for the blind in New York City to see what resources are out there for someone like me looking for a disabilities advocacy position in addition to my singing. He advised me to join a group called the Go-to-Work Club which is made up of people like myself looking for all kinds of positions who meet with employers to talk about interview techniques and what they look for in candidates for various jobs. This also was somewhat of a networking opportunity.

This job counselor who happens to be sighted got us some very informative and interesting meetings with the HR departments at universities, big companies in the financial district, and Independent Living Centers for people with disabilities. I learned a lot from the Go-to-Work Club meetings, was thoroughly impressed and inspired by the quality of visually impaired people in the group, and really received a lot of helpful information during our meetings with various employers.

One experience however stands out like the proverbial sore thumb.This particular meeting was with the director of the Human Resources Department at the very blind organization that was providing such resources as job counseling and the go-to-work club itself, so naturally, this would be the most helpful one of all right? Surely an HR person here would be well versed in all things blindness, correct?.

Well, the awakening I was about to have was as rude and cold as the blustery December day we'd all be walking out in after the meeting.Like all the other people who had hosted our meetings, the HR person had very kindly arranged for us to have some refreshments during her presentation, an assortment of cookies, soda, and water. Our placement counselor casually mentioned that such goodies were provided for us, but that we should wait to start eating until our presenter was there. He didn't tell us where the cookies and soda were, so naturally the people with sight in the room had the advantage.

Then, our presenter came in and before she so much as introduced herself, she grabbed a cookie. She began the meeting, had us all introduce ourselves, and began with a list of do's and don'ts for how we were to conduct ourselves in an interview. She said,"Now this is all from my own experience, and I can tell you what we look for and what puts an interviewer off."

She continued to munch and munch as she droned on through her list of topics. My stomach growled audibly as I thought of how our sighted presenter had the delicious mouth watering cookie in her hand. I began to daydream about cookie flavors, wondering what sort of assortment lay in front of us without us totally blind people knowing. Were their oatmeal raisin? Perhaps white chocolate macadamia? Were they chewy in consistency or very crispy? Were they the size of a Chip's Ahoy, or were they like a Mrs. Fields Cookie? Ah Mrs. Fields, that's something I haven't had since childhood.

Suddenly, my daydreams were interrupted.

"And don't forget folks," she said with her mouth full of cookie,"That you should never, absolutely never eat or drink anything while being interviewed."

Her pearls of wisdom got me thinking. Did she realize what mixed signals she was sending us? Did she somehow surmise that our blindness would prevent us from hearing her munching away? Did she not stop to think that the absence of a cookie in front of me or some of the other totally blind people in the room meant that we had no idea where they were, what kinds of cookies there were to choose from, or if it was appropriate to take one? My curiosity got the better of me, and I had to point out this cookie discrepancy to her.

But how?

Finally, a window of opportunity for me to do so presented itself. The presenter acknowledged my guide dog and that he was eating crumbs. Even though I knew perfectly well where those crumbs were coming from, I asked in the sweetest most innocent voice I could muster, "What crumbs." The lady seeming unperturbed, said, "Oh the crumbs from the cookies we're eating." Again, knowing perfectly well what cookies she was referring to, but to make clear that of course a blind person would not automatically know what she was talking about.

I asked, "What cookies."

She said, "Oh, there are cookies in here." Incredulously she added, "What is it, do you want one? Are you hungry?"

Suddenly, my heart started beating so hard and fast I was sure everyone in the room could hear it. I was hot with rage, a rage that had suddenly and unexpectedly filled me for such a minor infraction and a benign sense of cluelessness. The idea of this was like a hot poker in my side though, that people working at a blind organization would be this insensitive, that unaware of the consumers it is serving.

I thought back to our other meetings with presenters who are not accustomed to working with blind people, such as those at the financial companies, and it was they who graciously welcomed us, showing us where the refreshments were before we sat down."

Can't I just want a cookie? Do I need to be some underfed, inept, strange Neanderthal for asking about cookies in a room that others can see? Can't a girl know where cookies are without being given the third degree?" my insides shouted.

So I stewed and stewed over this in the meeting, feeling that the anger inside me might soon overflow into caustic words that would burn every bridge that might have been built for me in this group for networking. To add insult to insult, the woman continued to chew and chew on what seemed to be the bottomless plate of cookies as she was talking, not even giving us the respect to treat us like dignified job seekers.

After the meeting, the counselor told us that before we go, we should have cookies as there happened to be some left. Then, unafraid of what they would think, I asked what kinds of cookies there were, and I asked for two nice big delicious cookies, one sugar, and one chocolate chip. I also heard others in the room who were totally blind asking about the cookies, what kinds, if they could have one.

I realize that posture when you're trying to network for a job is everything. Even though nobody would think anything of it if a sighted person discretely took a cookie or two or three, we who can't see are suddenly rude or ravenous if we ask for the same right of our sighted counterparts. Perhaps it was my low blood sugar, perhaps it was the weather's getting increasingly colder, perhaps it was this minor infraction adding fuel to the fire of anger I felt about how already difficult it was for blind people to find jobs that sent me into a silent frenzy, but whatever the case might have been, there is a happy ending to the story. I not only got two delicious cookies after the meeting, but I was the last one to leave the room as I had something to ask the counselor. One last lonely cookie was waiting to be eaten, which then found a home in my stomach.