Braille Monitor                                                 June 2010

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The Evolution of a Blind Person

by Monica Venesky

From Barbara Pierce: Monica Venesky is a working wife and mother. Her personal story is instructive because it has not been simple or straightforward. Yet, with the help of members of the National Federation of the Blind, she and her husband are making a meaningful life for themselves and their children, and they are educating the community around them about the abilities of blind people. She offers her story here in the hope that it may help those who come after her to get through the challenges more quickly and efficiently. This is what she says:

A long time ago Lorraine Rovig, then director of Job Opportunities for the Blind, an NFB program funded by the U.S. Department of Labor, told me I should write an article for the Braille Monitor about my experiences as a blind person. At the time I wondered who would be interested in me and my adventures. I now realize that I have undergone an evolution in understanding my own blindness, and I recognize that others might be interested in what has happened and what I have to say. I have met many other blind people over the years; it seems to me that most of them have undergone a type of evolution, mostly in the way they think about themselves and their abilities. I have found that, once you get some blindness skills and realize all that you are capable of doing, the evolution begins and is contagious. Through education and heightened awareness you then allow and encourage those around you, family members, teachers, employers, and friends, to evolve as well.

My life as a blind person began when my parents registered me for kindergarten. The school nurse gave me a vision screening and noticed problems. She suggested my parents take me to the eye doctor. They assumed I just needed glasses. They were not prepared for the diagnosis of retinitis pigmentosa (RP). This was the moment those around me started treating me differently. Adults pretended I was sighted, at the same time telling me all the things I could not do. Several times during my childhood my dad commented, “You will be a burden on me for the rest of my life.” I did not really understand what all this meant when I was a small child. I knew only that the teacher put my desk at the front of the room and assigned me to the slow reading group. In junior high and high school I had heavy, unmanageable large-print books that did not fit on my desk. I had orientation and mobility lessons around the school and outside to cover street crossings. But never once did anyone say anything about using a cane or learning Braille. Everyone tried to make my vision work, even when I just could not see what I was supposed to. Looking back, I am not sure how well I would have taken to a cane or Braille. But I was never exposed to them, and no one encouraged me to master those skills. I had not known any blind people. I had no role models or sources of accurate information.

My evolution was in its infancy. As a teen I wanted to do teen things like go to Maingate, a local under-twenty-one club. I liked music and dancing just like any other kid my age, but my dad said I couldn’t go because it was dark and I couldn’t see in there. My mom never disagreed with him, but I did. I do not know if I was just being a rebellious teen or if, deep down, I knew he was wrong. I did not expect anything different from myself than from any other person my age. The problem was that I had no blindness skills or knowledge to back up my convictions.

Then I went away to college. Edinboro University of Pennsylvania had a very active disabled services office. I had never heard of paid readers before. I knew only how to struggle with a handheld magnifier and get tremendous eye strain. My blindness skills began to emerge. I loved having a reader read my tests. I also started learning how to differentiate between good and not-so-good readers and hire my own independently. Getting my textbooks on cassette was much better than struggling through the text visually. My evolution was gathering speed. When I first got to college, I met Tom Venesky. He was blind from retinopathy of prematurity (ROP) and later became my boyfriend. He did not have much in the way of blindness skills either. He had some residual sight, so he was pushed to use it. He knew a little Braille and never had a cane come in contact with his hand until he was twenty. He too was at the beginning of his own personal evolution. My parents did not like this relationship at all. They said, “You can’t have a blind boyfriend. You need to marry a sighted person who will take care of you.” What did they mean by “taking care of me,” I wondered? “I can take care of myself!”

Then I received a notice through the disabled students office from the National Federation of the Blind’s Erie Chapter. I was not able to attend the event I was invited to because of school obligations, but I called Judy Jobes, who was mentioned in the notice. Soon after that Tom, my blind fiancé, and I went to her house for dinner. I learned that she had retinitis pigmentosa too. Only hers had deteriorated more than mine had at that time. She cooked us a great Italian dinner with chocolate pie for dessert. All those times that my dad had said, “You can’t do that,” began melting away. I thought, Judy is doing things; why can’t I?”

Judy told Tom and me about the Pennsylvania state convention coming up in Lancaster. She invited us, and somehow found a way to pay for a couple of poor college students to get there. I met state president Ted Young among many other blind people. Some used canes, and some used dogs, and some, like me, were struggling with the problem of how to get around. I met blind married couples with kids, blind people in all kinds of professions, and blind homeowners living just fine on their own. I suddenly got it. I had proof that I could do it because all these blind people were already doing it. I had something to back up my claims that I could be independent. I also met Chuck Morgenstern, a member of the Lehigh County Chapter. He had RP too and became a resource I still contact to this day. He lived in my home town of Allentown. Now I had role models both at college and at home. Judy and Chuck made it clear that, if I were going to be a successful blind person living independently, I needed to get some rehabilitation training and blindness skills.

What I did not know at the time was that I would have my first major encounter with discrimination about blindness before leaving college. Unlike my experience with bad grades in high school, I did very well at college. My grade average was 3.65. I was also on the dean’s list several times. No professor made an issue of my blindness or my art education major until my student teaching. During my evaluations with my student teaching supervisor, it became clear that she had never before worked with a blind student. She said many things that made me feel substandard. She focused on all the things I could not see rather than my performance in the classroom.

Student teaching was hard work, and I developed some very good lesson plans. One in particular was about the modern artist Georgia O’Keefe. She studied organic shapes in nature like flowers and leaves. She often depicted them abstractly. Georgia O’Keefe’s birthday fell during my student teaching, so I decided to give the lesson a birthday party theme. We talked about the artist’s work, looked at flowers and leaves I had set on each table, and painted nature as O’Keefe did. The kids had a great time and made some great artwork while learning about an American artist. My supervisor picked the entire lesson apart. In her opinion nothing I had done was correct because I had hung one painting upside down. Never mind the other fifty paintings that I had hung right side up. Just like any sighted teacher, I had made a mistake at the end of the day, just before leaving for the weekend. I did correct the hanging of the child’s painting on Monday morning.

Hysterically stressed over my student teaching as it was unfolding, I told Judy Jobes about the comments my supervisor was making. I had done very well my entire college career; now one person was going to keep me from graduating just six weeks before the end of my last semester. Judy advised me to call the National Center. I spoke to Lorraine Rovig and Pat Maurer, then to President Maurer. Within a day an attorney had called me on behalf of the NFB. I was not emotionally prepared for such an encounter with discrimination. Some people advised me to give up; some advised me to fight hard. The lawyers wanted documentation of what had happened. My plate was already full with student teaching. In hindsight I understand that I could have handled things better. I did get my degree, but, despite all the blind teachers I talked to, I was disheartened by the entire experience. Yet I assumed that this awful experience was bound to have been rare, like winning the lottery. I had no idea that years later more was to come.

After leaving college and while my situation was being worked out by the lawyers, I decided it was time for me to do what Judy and Chuck had encouraged me to do: attend a residential blindness rehabilitation center and learn, as Chuck said, how to be a blind person. I decided to attend Blind Industries and Services of Maryland, directed by Rosemary Lerdahl. It was not an official NFB center, but it had very strong NFB-style teaching and philosophy. Tom was in a similar place in his evolution, so he decided to attend as well.

We learned all sorts of blindness techniques for independent living, mobility, Braille, and accessible computers. We went shopping and even whitewater rafting. During our training we attended a national convention. It was wonderful. We were able to network with many other blind people. We went to a Job Opportunities for the Blind (JOB) seminar and learned that Northwest Airline was hiring. We were at the end of our blindness training, so we applied and successfully negotiated the rigorous process. We endured long commutes on public transportation, including two transfers. The commuting time was almost like working another job, but we did it. We were working. After all, this was the big goal. Despite being late because of broken-down buses several times and by working hours and hours of overtime, we were able to purchase a home very close to work. Instead of a three-hour commute, we now had a fifteen-minute walk. The house was not quite what we wanted, but it made us more reliable in getting to work. We worked in reservations and gave up a lot to keep working.

Our attendance at monthly NFB meetings was suffering. Reservations is a 24-7, 365-days-a-year operation. It takes a long time to build up enough seniority to have Saturdays off and in most cases to work days. It also takes a long time to build up enough seniority to have vacation time in the summer, so our attendance at national convention suffered. We really missed it. We got such a charge out of going. Besides, we knew that we had much to offer the NFB, but we had to endure this deprivation because of our work schedule. We thought we could still be good Federationists just working; now having two children; volunteering at schools; and coaching our kids’ baseball, soccer, and basketball games. These things were important too, weren’t they? We still felt bad. We constantly put in for vacation days that never cleared on Saturdays. All this stunted the evolution we assumed to be over.

We started having problems at work because of computer systems changing and being only partially accessible. We also noticed biases and misconceptions about blindness in the workplace getting worse and worse over the years. We felt helpless. We fought the misconceptions as well as we could on our own. We needed the NFB, but we could not get involved again because of work schedules. Then the Baltimore reservation office announced its closure. The company was opening a new office in Sioux City, Iowa. We had the choice of moving to any of a few other cities, but for one reason or another we ruled most out and looked closely at relocating to Iowa. Once again, to keep working, we sacrificed and moved. Now, in an office with mostly lower-seniority employees, we could have Saturdays off.

We went looking and found the Siouxland Chapter of the NFB. Once unpacked and with kids settled in school, we went back to those inspiring monthly meetings, but suddenly the misconceptions about blindness exploded in our workplace. The misconceptions and under-accommodation caused Tom to be terminated. Surrounding the termination were issues of providing us the print information for sighted coworkers in an accessible format. We were being segregated and told that transportation to and from work was our responsibility. We could not ask around for rides, though our sighted counterparts asked for rides all the time. And there was much more. So glad we were back and active again in the Federation, we turned to the National Center for help. Once again the NFB came through. Tom got advice on where to go to file a human rights claim. The NFB assisted us in locating legal advice, resources, and a list of attorneys. I thought my college discrimination years before had been a flash in the pan, but I was very wrong.

Now that I am about to turn forty and reflect on all this, I realize that my evolution is still not complete. In fact, I wonder if it will ever be finished. It seems that, no matter how much success my husband and I have, we are not finished. Skill and ability do not matter. The sighted people in our lives still hold on to their misconceptions. The worst part is that mostly sighted people who do not attempt to understand and view blind people as equals, do not even realize that what they say and do is wrong. It doesn’t even cross their minds that Tom and I and other blind people are being treated unequally. Discrimination is such an ugly word. I hate even to use it, but I must. I can’t let it be ignored. I must fight it; and with the knowledge, resources, and numbers in the NFB I know I can make a difference.

I now understand that this is why Lorraine said all those years ago that what I had to share is important. Maybe a young blind person today can evolve a little faster and more easily because of my sharing the story of our experience. Maybe, when that young person gets to his or her fortieth birthday, it will not be necessary to use the word “discrimination” and fight inequality.

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