by Donna F. Smith
(Editor's Note: Donna F. Smith is a training and technical assistance specialist for Easter Seals Project ACTION, a national-scope program funded by the Federal Transit Administration to enhance transportation options for people with disabilities. She has a 21-year-old daughter of her own, and has doubtless passed along to her, her philosophy of disability: every individual has the right to life, liberty and the pursuit of happiness, and this right should not be diminished by discriminatory actions based on disability or other perceived differences.)
My challenge in telling this story is to keep from making it one of those sappy articles on disability that I absolutely loathe. But the fact is, I owe everything I have achieved as an adult to my mother's foresight and intuition in raising me to be as independent as possible. As the glory in this story is hers and not mine, perhaps I can attribute any sappiness to motherhood and her strength of character, rather than my disability. I think the thing that awes me the most is that she made her decisions about disability, took her stand and put them into action, years before the terms inclusion, equal access, and civil rights were applied to the disability community. She did what she did because she believed it to be right and ethical, and because in her endeavor to be the best mother she could be, she sought the path that would make the most opportunities in life possible for me.
In 1960 Arlene was a young housewife, mother of four with a high school diploma, doing exactly what she had always wanted to do. The fact that her goal in life was to get married and raise children should in no way indicate that she was passive or lacked ambition. Nothing could be farther from the truth. She was competent, self-assured, strong-willed and threw herself, heart and soul, into creating a safe and happy home that focused on nurturing her four children and any other children from the neighborhood who found their way into her mothering realm. She did all the essentials to motherhood and housewifing -- she cooked, canned, cleaned and sewed, and she spent volumes of time playing and teaching. She was smart enough to see to her own adult needs, too, and she claimed her quiet time to read, pulled rank to watch her favorite shows on television, sent us all to the babysitter's while she and my father entertained friends, but her focus was most definitely the welfare of her children. All was not always rosy either, and she faced very adult struggles and concerns, but we didn't see any of that until much, much later in life.
About midway through 1960, Arlene was in her new three- bedroom ranch house on the outskirts of town, facing me, her youngest child, across a high chair tray trying to convince me that I really did like strained peas and carrots. While making eye contact and funny faces to divert my attention from the odious task at hand, she noticed some unusual-looking spots near my pupils. Concerned, she made an appointment with the family ophthalmologist to have it checked out. In a very short period of time she learned that I had retinoblastoma, cancer of the retina, and that the prognosis was total blindness. Surgery was scheduled to remove the right eye, which was the most affected, and an extended schedule of treatments -- an injection of a drug thought to be useful at that time and radiation -- was arranged to treat the left eye. It was never assumed that such treatment would be successful in saving any vision, but it was hoped that it would be successful in stopping the tumors and saving the eye intact in case future medical treatment might be able to restore vision.
For the next year and a half, Arlene's days were filled with a mixture of hope and anxiety, a mother's grief over anything that threatens her child, and a fierce determination to see her child come out on top even if she might not completely understand what all those challenges might entail. This was all complicated by a sobbing child who quickly learned the routine activities that led almost daily to painful injections in the arm and episodes with a very large and scary-looking machine, and the reactions of family and friends which ranged from the minority reaction of "just tell us how we can help," to the majority reaction of fear, pity, and hysterical proclamations of offense against God. She neither gave in to the terror of her child or the overwhelming negativity of the uninformed and unwilling to learn. She reached deep within herself for the calm and balance that made her such a good mother, trusted her own basic instincts about what was right, and set about learning all she could regarding living as a person who is blind.
Though she experienced in full measure the heartbreaking sorrow that a mother feels when something happens to her child that is beyond her control to stop, she also never doubted that I'd not only survive but that I would not be diminished by it, and she took it on as her task as my mother to help me find the best ways to cope and come out the winner. One of her basic tenets in life is that whatever challenges we face make us stronger and better people for having faced them, and facing disability was no different from any other life challenge. She was absolutely sure from the start that, although she would have given anything for me not to have to deal with blindness, now that it was inevitable, I would be a stronger, better person because of it. She systematically rejected any notion that I would be inferior to other children, that there would be things in life I wouldn't be able to achieve or enjoy, that lower standards and expectations would have to be set for me because I had a disability. She was bombarded with such sentiments from people who just assumed that such was understood by any rational person and that to expect greater of me was cruel and unrealistic. She became fiercer in protecting me against such negative influences than any tigress guarding her cubs, and her innate belief in my inalienable right to be allowed to have the chance to strive for all that I wanted to accomplish in life, blossomed and grew and surrounded me as I continued to grow and develop during those crucial early years of childhood.
Her belief in me was so strong and was passed on to me so completely, that it honestly never occurred to me to question whether I could accomplish any task set before me, as a blind person. My only consideration was how I would accomplish these tasks as a blind person. This attitude was passed on to my older brother and sisters and to all the children in the neighborhood, and I spent my early years in what I later realized was an insular world of equal treatment and open acceptance. It was a shock to me to learn later that I could be denied participation or rejected out-of-hand because of my blindness. I was outraged and looked to my mother to explain how people, adults and other children, could get away with such unfair, unfounded and otherwise absolutely ludicrous treatment of me. She responded as usual with understanding and empathy, education about the reality of discrimination, confirmation that the problem was not my blindness but others' ignorance and, in her book, unethical reactions to blindness, and insistence that I could rise above such ill treatment, find another way to accomplish my goals and perhaps provide a little enlightenment in the process. Thus began my life-long commitment to public education regarding disability and the seeds of activism that planted me firmly in the middle of the disability movement as an adult.
I can say without any hint of equivocation that I owe my independent spirit, my conviction that I have a right to that independence and to pursue the goals that I set for myself, to that young woman who made it her business to be the best mother to me that she could be. She was and still is all that and much more to me. Though it was over 25 years ago that she handed over, or I took the reins of my own life, (we're still subject to arguing about that) she still provides me a willing ear, a little tea and sympathy, and a swift kick in the butt to get me moving toward finding a solution. Nowadays she shares "Arlene's philosophy of disability" (it would never occur to her to call it the "independent living philosophy") with her peers as they begin to encounter poorer vision, decreased mobility, shortness of breath, reduced stamina, and any of a number of things associated with advancing years. I know that she uses my life and my accomplishments as examples to follow, embellishing shamelessly and never pausing to give herself credit for being the impetus behind all that I do. The only time I ever hear her acknowledge her role is when we've been "discussing" something I plan to do, like my recent 1,000-mile move from Mississippi to Virginia to pursue career advancement, and she finally ended by saying, "I set out to make you independent and damn if I didn't do a good job."
CAPTION
Donna Smith, standing in front of her mother, shows off her white dress along with her sisters, Barbara and Laura. All three, along with brother Barry (right) were about to perform in a program for their grandmother. (Photo courtesy of Donna Smith.)