When I was 16 years old, I was serving as the facilitator of activities for a group of blind and visually impaired teenagers in the greater Houston area. There were some 70 teens on the mailing list, and about a third of them showed up at one time or another to an event over the course of the 24 months that I was active in arranging activities for the group.
My work placed me in frequent contact with a group of local blind adults who had agreed to serve as mentors. Many of these adults were members of the Houston Council of the Blind. Some are names that would be familiar to members of the ACB now: Michael and Carolyn Garret and Ed (Doc) Bradley. Carolyn persistently urged me to come to HCB meetings during our conversations. I persistently shied away, knowing that my parents would balk at driving 30 miles for yet another activity. I finally began coming when I learned that the organization gave out scholarships.
I was the youngest person in the room by many years. However, the Garrets, Doc Bradley, and a couple of other members kept in touch with me as I went away to college; and in 1992 I attended the ACB of Texas convention, bringing a couple of college-age friends. I learned there that efforts were underway to found a Texas chapter of the National Alliance of Blind Students. At the ACBT organization, I began to understand the power of networking.
By 1994, I was interested in attending a national convention. A friend was planning to attend the convention in Chicago and offered to share her room with me and allow me to pay her for my portion later. My aunt picked me up from the airport, saving me the cost of a shuttle ride. I had been working part-time while I was in school, and I was still young enough that I benefitted from Social Security work incentives for students; so I had a fair amount of money saved for my trip. I charged my flight on a credit card--a move I would come to learn later is never advisable but is quite common.
My attendance at the convention was a very enlightening experience. I attended a number of sessions sponsored by various affiliates as well as most of the general sessions. I began to broaden my understanding of issues facing the blind community and to meet people from other areas of the country who shared common interests and struggles with me. I was elected to the NABS board and began to learn some organizational leadership skills.
I was not able to attend a convention again until 1998. I don't remember how I financed this convention. In fact, I remember very little about it at all. The trip occurred at a time in my life that was very difficult emotionally due to sudden vision loss, a cross-country move, and other personal losses occurring all at once.
In 2000, I attended the convention in Louisville. I live just two hours away; and my dad transported me and two of my roommates from my home, saving all of us money on transportation. One of my roommates' parents transported us the other way. We reserved a suite, and five of us stayed in the room (one sleeping on the couch). I had a part-time job, and I helped one of the girls out with her room expense so that she could attend convention for the first time. We brought nonperishable food, and I baked several dozen cookies and brownies for the trip. In the mornings, I ate a cheap breakfast, and in the evenings I often ate appetizers instead of ordering a healthy dinner.
In Louisville, I really began to understand the value of the convention experience at all levels. I met some teens who were attending their first convention, and we spent a couple of evenings chatting late into the night so that I and my roommates could answer some of their questions. Having recently graduated from college, I attended more affiliate meetings beyond NABS and participated more actively in the general sessions. I also went on a couple of free tours and got a taste of the allure of accessible tours.
In 2001, I had been working; so my convention experience was a bit more "extravagant." I flew to Des Moines, and the cost of the room was split between three people instead of four. I did not go on any tours but did have a little money on hand to spend at the exhibit hall.
In 2002, my convention experience was financed almost entirely by friends, both local and national. I had not been back to Houston since 1998; and some local friends helped fund my trip so that I could stay in town after the convention and visit. Friends from other states helped pay for my room, and several people took me to dinner.
I have not attended a convention since 2002. I don't complain about it year after year as most of my friends go excitedly off and come home eager to report in about their fun-filled weeks. I don't say a word except, "I'm sorry," when friends mourn the inability to get time off from work for the Fourth of July week because the ACB convention is an accessible vacation. I load up the audio streams when I'm home and able to tune in live--and when I can't, I listen to the archives later. And I give my friends a listening ear. It hurts more than I would ever dream of letting on; and the best way I know to cope with it is by enjoying the life I have. Convention will always be there. I hope that my friends will be, too; but reality is that from year to year, we never know which of us will go and which won't. And yes, convention is fun--and often it is the only opportunity we have to see each other in several years.
I endure my inability to effect meaningful change in the organization with what grace I can muster--and sometimes it's hard because when I become vocal about something on the email list, a leader's response is often rightfully, "You need to be at convention casting your vote and speaking up on the floor." But I can't. I am not qualified for first-timer awards because I've managed to make it to five previous conventions. Getting stipends based on leadership is difficult for me because I live 30 miles from the neareast chapter and the blind people in my local community are members of the NFB. My only option is to continue trying to find work if I really want to go to convention. So I do continue within the limits of what my community can offer since I am re-entering school, and I remain quiet most of the time--until the population of people on fixed incomes is attacked for being rude and selfish.
Perhaps some of them are rude and selfish. But most are just poor and can't find a way out--and many are not gifted with stubbornness, problem-solving skills, and above-average intelligence. Many barely made it through school, and many have significant challenges to face that those of us who grew up in the 1950s, 60s, and early 70s living never dreamed of facing, especially if we lived in metropolitan areas and they live in rural areas.
Society is much different now than it was then, and the cost of living is really astronomical compared to what it was in the past. It was hard to make it on public assistance 15 years ago. It is impossible now. It once was possible to rent an efficiency apartment, albeit difficult, while receiving SSI. It really is not possible to do this now. Rent and utility rates have gone up. In some neighborhoods, utilities have doubled just in the last four years! Subsidized housing is an absolute necessity--and there is not enough of it and it is not safe to live in. As a female with disabilities, crime vulnerability is uppermost in my mind when choosing a place to live; but more often than not, my only choices are neighborhoods ridden with rape and murder unless I make financial sacrifices that prevent me from doing anything else that will improve my lot in life. These aren't issues to judge someone for. These are issues that those of us who manage to rise above the circumstances should be taking in hand to help address! For as many stories as people can tell me about lazy SSI recipients who won't do their part to make themselves employable, I can tell as many stories about people who are employed despite low levels of literacy, blindisms, and poor dress habits; and as many stories of people who are working hard to do their part and are not being served well by vocational rehabilitation counselors who would prefer to place them in sheltered workshops or who simply wait for them to locate their job and get hired before finally stepping in with any assistance. These are the people who need us and who would probably step right up and become active ACB members if we reached out to them with a compassionate attitude instead of judgment and accusations of self-pity. If they appear frustrated by their hardship, there is probably good reason: we expect a lot of them and they can't see much return for their efforts. When you're in the pit, it's hard to be thankful for the inventor of the shovel if that shovel isn't being used to dig you out!
I have lived in the pit for a long time: most of the last 16 years. I know how it feels to climb out only to get thrown back in. It hurts quite badly. I can stay quiet about it, or I can use my experiences as an advocacy tool. Sadly, it seems that when a person uses personal experience as an advocacy tool, he/she is often accused of self-pity. Recently this is what has happened to me when I tried to discuss these issues on the ACB-L list. The discussion started simply enough as a discussion about why blind people don't tip. I tried to point out that some don't intend to stiff the servers or other people who should be tipped (and the list is rather long), but they simply can't afford to tip. I was told rather rudely that "if you can't afford to tip, you shouldn't come to convention because this is part of your convention expenses." At this point, the discussion morphed from a civil discussion into a very personal discussion.
Tipping is really the tip of the iceberg in the discussion; and it is unlikely that it will make or break someone's convention budget. However, considering the fact that one should be tipping taxi drivers and hairdressers as well as wait staff in restaurants, I would very quickly run out of money to live on due simply to the number of cab rides I take for doctor visits. It's a very overwhelming thought; and this doesn't make me rude or selfish as some people on the list prefer to think of me. It makes me poor! When I should choose between tipping the server or buying a meal that is compensation for a person who has been reading or driving for me all morning, which will it be? I should probably have stayed home and simply paid the person; but often this is a matter of logistics: the person will accept lunch but not money. Perhaps I should feed her lunch and eat nothing for myself... This puts me in a quandary then, as she will refuse to eat on the account that I am poor... Most of the time we end up eating fast food, and there is no need to think about tipping. Sometimes, I ask where the person would like to eat, and I do my best in the tipping department. Generally, I do my own eating out at the end of the month and add the tip to the bill.
However, in the ACB-L discussion, the revelation that I don't always tip puts me in the same category as social losers who never tip--and social losers who whine about being poor. Nothing I said was really heard. I actually got a response from another blind person accusing me of wanting a handout. "Shout it from the rooftops. Sarah's poor. Do you want a tin can?" Or something to that effect...
I wonder if that's how the sighted world sometimes views us when we try to advocate for much-needed changes or accommodations. "Poor ACB members. They're blind. What do they want, a tin can?" We, of all people, should be more understanding of each other.
I hope that someday I'll climb out of the pit again. When I do, I can never forget the life I've had to live; but more than this, I must look at the differences between the life I had to live and the life that today's 23-year-old must live if she is supporting herself as I did when I was 23. She really can't do the things I did when I was 23 and survive. She would never make it to convention. I hope that someday I am able to go again--and I hope that someday I am able to give someone the gift of the convention experience as people did for me. It could change his/her life--and I might just be paving the way for some future ACB president.