Table Of Content

- ‘, 5 . r4’ q || ‘ , | | | 4 | y | 7 y q . ; published by '~~ Sharing to Learn f . Cc ire COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 ISSN 0822-0638 EDITORIAL SHIRLEY McNAUGHTON & support of his family kept him in a sensitive and clear fashion PETER LINDSAY forever striving forward and achiev- around issues related to nutrition, hen our associate ing new goals. mobility, communication and medical editors team met last This issue of Communicating care. Alice Born describes how the March, the theme of Together then is dedicated to effects of aging may be experienced aging was supported unanimously. Andrew Murphy and his family. In earlier by those with severe physical The experiences of many of our our feature section, we share a disabilities and recognizes the psycho- friends were providing striking collection of Andrew’s and his logical and social, as well as the evidence of the differences and father’s writings throughout the physical stress that can accompany similarities of the aging process for eighties, as well as some messages loss of independence and control. We those with and without major physi- about Andrew, as his family and are reminded by Dr. Schwartz of how cal disabilities. Our attention was friends reflected upon his life. One those who are able-bodied can learn directed to life passages as well, of the Wows 1s an article by a young from those with disabilities, for often where we saw great differences in reporter who was profoundly af- they have arrived at life’s challenges the stages typically associated with fected by Andrew's courage and earlier and to a more severe degree aging. Little did we realize that those spirit even though she knew him for than those without disabilities. of us who knew Andrew Murphy only a few days. Kari Harrington, a Geb Verburg deals with aging and would be forced to recognize the former associate editor of Commu- life transitions through examining severe impact of aging upon this nicating Together, also writes of changes in the amount of control we young man whom we had known Andrew's impact on her. have. Through describing the situa- since he was six years old. Andrew tions of two persons with whom he died on July 7, 1994 at age twenty- has worked, Geb examines how six. That his body would succumb to Once in a while we meet someone different motivations can lead to pneumonia at such a young age who stands out from the rest of different consequences as control is saddened us greatly. the flock; someone who flies acquired or lost. He points out how the If we measure Andrew’s life by faster and farther and higher “firsts” in each child’s life can come the same yardstick as those who are than we ever thought possible, later for children with disabilities and able-bodied, we would have to and helps us to do the same. can sometimes be missed completely conclude that he moved through few with the concomitant lost opportunity Rev. Gregory E. S. Malovetz of life’s typical passages. We would for learning. In Consuming Technol- Pastor, St. Charles Borromeo, also realize it was not for lack of Skillman, N.J. ogy, Robert Haaf describes the need to trying. Andrew struggled all of his consider the changing communication life for independence but his severe strategies needed as individuals age physical and speech impairments The Perspectives by Dr. Brian and the importance of the individual placed strong obstacles in his path. Schwartz and Alice Born provide us assuming increasing responsibility for His untimely death as a young man with valuable information regarding decision-making regarding the most was especially tragic as he seemed to the health, physical and psycho- appropriate method for communica- be within grasp of achieving the social issues relating to physical tion in a given situation. In independent living situation that he disability and how these can impact SymbolTalk there is further attention so desired in his life. upon aging. Dr. Brian Schwartz given to the growing control that AAC Fortunately we have his many shares the knowledge he has gained users should have as they approach articles in Communicating To- through his medical practice in adulthood. gether that chronicle, in his own which, over the years, he has served When all is said and done, how- words, Andrew's struggles with life‘s over twenty patients with cerebral ever, it is through observing the daily challenge. Through these articles, palsy as well as a number of persons events in the lives of persons with we can look back on the unique life with other disabilities such as para- challenges similar to those of Andrew passages of this remarkable young plegia, muscular dystrophy and Murphy that we come face to face man. His determination and the multiple sclerosis. He offers advice with the aging process! As we who bo COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 are able-bodied consider our own details of a daily excursion or a week- prepare them and support them if they, lives and those of our children and end visit, or managing money and like Andrew, do begin to experience grandchildren, we think of the many planning meals without the opportunity the “signs of aging” in their twenties? life passages that we all experience — of handling the currency or preparing We have learned from Annalu Waller walking independently, eating inde- the food, or mastering the strategies and Kari Harrington (Communicating pendently, staying at nursery school required to use communication tech- Together, March, 1994) that even the without a parent, first day of kinder- nology, or managing many pieces of most successful and confident indi- garten, first “overnight” with a friend, complex technology, or coordinating viduals with cerebral palsy can be first stay at camp for a week or a the input of rehabilitation team mem- quickly devastated by incapacitating month, first date, beginning and bers or arriving at independent deci- ailments that make an unexpected completing high school and univer- sions when family, professionals and appearance. Frequently, professionals sity, beginning a career, living away agencies all have input and varying lack the knowledge about how to deal from the family home, marriage, agendas and degrees of control? Do we with these “mysterious” conditions becoming a parent, getting promo- recognize and applaud the strength it and our lack of knowledge compounds tions, changing jobs, retiring, becom- requires to follow a path no one else in the whole situation. ing a grandparent, dying in old age. one’s social environment is taking? Finally, even if a family has the We know these passages will be And who will provide the support good fortune to find unusually helpful experienced very differently by those that is needed? As long as they are in professionals for their child during his with severe physical impairments and school, most educational systems do or her school years, all of that support their families. Many may be experi- try to provide special assistance to the can disappear as soon as the individual enced only with great stress or may be developing child with profound physi- leaves school. One of the parents we missed altogether. The question we cal disabilities. Speech pathologists, interviewed to gather information must ask is how those who have special educators, occupational thera- about their experiences with profes- disabilities and those close to them pists gather to help the child and his or sionals (see June, 1994 issue) is can accept and value the different life her family. The support they provide is representative of the many parents patterns associated with physical often restricted to the technical features who are in exactly that position. At limitations. The achievements will be ~ of the child's world — communication the time of the interview, her daughter had just used up her school-age credits different. But surely they require as systems, seating or adaptations to the much or more determination, self curriculum that may be needed. They and support was terminated. She was discipline, competent use of control do not focus on supporting the overall essentially sent home where, without and energy as is needed by the able- psychological well-being of the chil- the daily stimulation of school, she bodied person. Surely, they also dren and the milestones they are trying was rapidly losing many of the skills deserve equal or greater recognition. to achieve in their unique passage into she had steadfastly acquired. Her For those who are able-bodied, the adulthood. They do not focus on parent, eager for something to provide continued stimulation for her daughter community in which they live sup- preparing the environment so that it was resolutely searching for alterna- ports and celebrates their life transi- honours and celebrates the unique tions. With our strong emphasis upon passages and accomplishments the tive programs, mostly to no avail. integration, those with disabilities child is achieving. Another parent has responded by may lack a community which can Nor do they necessarily adjust their forming a group to build supportive share and rejoice in their particular normal practices to a potentially unique housing. The former parent was life passages. As we considered this and possibly dramatically shortened considering moving to a location editorial, we could not refrain from developmental pathway. Andrew's life where there might be a program or a asking ourselves what is done by teaches us that the journey may indeed place for her daughter. Both were schools and agencies to recognize the be very short. How should typical saddened and perplexed by the sudden unique life passages of those with expectations be altered? What things loss of support for their daughters. physical disabilities. What do we do must become priorities? As we failed As we pay tribute to Andrew to foster an appreciation and under- to do in Andrew's case, we somehow Murphy and his family we hope our standing of the differences and must learn how to convince bureaucra- readers will be motivated to consider similarities in aging between those cies that they don't have the luxury of aging as it is experienced by us all and with and without disabilities? How leisurely decision-making and deferred celebrate the different pathways as well as the passages we all share. spontaneously do we recognize the action. unique passages such as directing Moreover, what do we do for the attendants, or pre-planning minute individuals themselves? How can we COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 Celebrating the Life of Andrew Murphy Those who have been readers of Many changes are needed before the Communicating Together since the hopes of those with severe disabilities eighties will remember the many articles can be fully realized. Many compro- by Andrew Murphy and his dad, Mark. mises had to be made by Andrew — In all, they wrote eighteen pieces for the many more than we would wish for a Family and Community section. On July young person dreaming of his future. As 7, 1994, Andrew Murphy died of pneu- we consider aging and life’s passages in monia, at age twenty-six. We share his this issue, we are struck with the very family’s deep sense of loss. short life Andrew had and the many We treasure the long association we transitions which he missed. His fragile had with Andrew and we wish to cel- physical condition was always challeng- ebrate and remember his life through ing his desire for accomplishment and dedicating this issue of Communicating greater independence. Nonetheless, Together to his memory. In so doing, we Andrew’ s keen mind and strong resolve, honour and pay tribute to his mother, in partnership with his family’s determi- Francine, his father, Mark, his brothers, nation, kept him forever trying to reach Andrew with his family: Mark and Jeffrey and his sister, Erin, for his goals. Along the way, he learned a mother, Francine, father, Mark, their caring and their understanding of great deal and frequently shared his brothers Patrick & Jeff and sister Erin. Andrew’ s aspirations. As we reflect on thoughts with us. We feel the best way to Andrew’ s life through his writing, we Christmas, 1992 honour Andrew ts to look back and urge all individuals who know the share excerpts from the articles he wrote difficulties imposed on those with severe with his father, beginning in 1982 with speech and physical impairments to our Inaugural Edition. strive for a more humane and sensitive society. Events to Remember when I was away and we were doing I couldn’t go, and when I said yes, something different every day, but they said they felt I should under- Age 14: (Fall, 1982) after I got home from camp it was stand and be quiet. But I was still Introduction boring on the days we didn’t do angry and I still felt like screaming. i, my name is Andrew anything special. But since then, Finally, my mother said it was fine Murphy. I am 14 years when my brothers and sister do and that I could scream if I wanted old and have cerebral things I can’t do and I have to stay to; that it was natural for me to want palsy. I have been using Blissymbols quiet and maybe watch TV for a few to scream when I was angry. After to talk to my family and teachers for hours, I joke with my mother and twenty minutes of screaming, I felt a almost eight years. I can’t control my say, “Now it’s my turn to ‘vege’.” little better. hands, so I use eye pointing to show which symbol I want to use. I like Age 15: (Winter, 1983) Age 16: (February, 1984) going to the theatre, the ballet and Anger Loneliness ; the symphony. Recently, I saw (Re hockey game at Maple Leaf Gardens) I went to stay at the Ontario Evita.... My dad and I want to tell I was very excited to go myself, Crippled Children's Centre Hospital teachers and other people what it’s but my parents explained to me that I when my parents went away for one like for families with children who couldn’t go because there were too week. It was a very hard time for me. can’t speak... We want to make sure many steps and it was too difficult to Because I am not able to relax in a people understand the problems we get my wheelchair up there. So I got new situation, I become very tense have with these other ways of angry and started to scream. My and I was unable to eat with all the communicating and some of the fun parents wondered why I was scream- different staff looking after me. I things that happen when we try to ing. They asked if I understood why tried to talk to the staff, I tried to get use them.... (Re camp) It was fun COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 their attention by making noise, but another year of learning and working Age 18: (June, 1986) it just didn’t work. Because I com- on the computer. I am going to spend Integration municate only with my eyes on my time learning to read. In the last issue, I mentioned that Bliss board, it takes more time for I was going to have an operation to people to talk to me or listen to me. I eliminate my drooling. Well, I had it Age 17: (June, 1985) was mad and I was lonesome, but I done over the Christmas holidays, Skiing had visitors that cheered me up and and while I was very uncomfortable Everyone else in my family skis brought me food. My teachers and initially, the operation was a success. and I have found it frustrating since I friends came. Now, my face is always dry, and I wasn’t able to join them. I communi- feel much more comfortable. You cated this feeling to one of my may ask what this has to do with Age 16: (September, 1984) “special friends” and much to my communication. Well, a lot of Helping surprise, she arranged for me to go communication comes from “body People who are permanently skiing on my birthday.... She ar- language” and “expression”. Look- “disabled” are generally the ones ranged for the ski instructors to take ing better, as I do now, encourages being helped by others. In each of me up and down the hill on the ski other people to want to interact with our lives, however, we all need help patrol toboggan. It was a terrific me.... | go out of my class for handi- from someone at certain times and experience and a real thrill. capped students for three periods everyone is capable of helping each day...[ enjoy being with the another person in one way or an- non-handicapped kids, although they other. Being able to help a friend Because my aunt and uncle are very shy and have not taken the gives us anice feeling. Recently, a took the time, I was able to time to learn how to communicate good friend of mine, whom I had with me. communicate really well with met as a volunteer at school, had to be admitted to hospital.... When I my Blissymbols and eye point- first went to visit her I felt strange ing. Not once during the week Age 18: (December, 1986) and uncomfortable with the other was I frustrated or unable to Friends patients. Then I became used to them express my thoughts. It was a There are not many friends and their different ways and forgot terrific experience for me. outside my family whom I can talk about myself and was able to relax to. And after all, there are only and make my friend happy each time certain things you can talk about I went.... My brothers and sister have with your family, especially your a lot of friends who are often over at parents. In Toronto, I have a few Age 18 (March, 1986) our house.... I wish they would take Moving good friends who spent lots of time the time to learn to communicate talking with me. I enjoyed these long Along with my family, I moved directly so that I would be able to talks and miss them. My goal this to Clearwater, Florida, during the answer their questions and ask them year is to make new friends in Canadian Thanksgiving weekend. questions about what they are doing. Florida with whom I can communi- We have a very nice home, and my This would certainly help me enjoy Gate: bedroom is on the ground floor my time when they are around. And, which makes it much easier for my who knows? Maybe sometime in the mother to take care of me. I like my Age 19 (June, 1987) future I would be able to help them school very much.... My teacher Communication by being able to communicate with Carol is very kind and interested in I just celebrated my nineteenth them. learning how to use the computer birthday. It was a good time to think Because my aunt and uncle took with nonspeaking people.... I miss all back about how my ability to com- the time, I was able to communicate my friends very much. It gets quite municate has changed over the years. really well with my Blissymbols and boring since I don’t have friends to At the beginning, the fact that I eye pointing. Not once during the take me out on the weekends. If I could not speak made communicat- week was I frustrated or unable to get to know more people I can do ing very difficult and frustrating. It express my thoughts. It was a terrific more things and enjoy what Florida was a guessing game. People, mostly experience for me. I had a wonderful has to offer. my parents, had to guess what I was time.....Now it’s back to school and COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 thinking, and I had to react in a to go away to college. Now that ’'m help of course. Thinking about positive or negative manner to let a senior, this is very important to me. making new friends and staying in them know if they were on the right I feel more mature and I know more touch with my old friends. Thinking track. Thankfully, Blissymbols were about life. about seeing more of the world and discovered, and I started using them how I can make it a better place. back in 1974. I hate to think what Last year I successfully com- Age 22: (March 1990) would have happened if they had not pleted the fall semester at Edinboro (written by Kari Harrington after been available. My experience with University. On the way home for receiving a letter from Andrew) Blissymbols has been very positive, Christmas, I spent a few days in This year Andrew is taking three and I was able to grow along with the Pittsburgh Children’s Hospital being courses, Philosophy, Introduction to system and develop a full range of tested on a new drug called baclofen Art, and Computers, as well as communication abilities. This al- to see 1f it would help control the spending two hours a day on his new lowed me to participate in and enjoy tenseness and spasticity in my body. communication system and extra life a lot more. Now when I look at After the test, I thought it would writing classes to improve his my board, I see that there are no work. We then had to decide when I writing skills. ... There must be longer Blissymbols on it. It is com- would have this pump implanted in many times when Andrew feels pletely filled with words and with the my abdomen which would adminis- exhausted, but in his letter he writes alphabet and numerals. We update ter the drug through a catheter to my about how it 1s all worth it. He loves the words on the board periodically, spinal cord. Edinboro University and the great and this gives me a chance to com- In January, I returned to school people there who are so caring and municate effectively with those looking forward to the challenges of he loves the freedom of being away people who take the time to interact anew year. Unfortunately, my body and doing anything he wants. This with me. didn’t cooperate. I became tense balances all the responsibility he has, very often and was biting my mouth and makes him feel very adult and so badly that the people at Edinboro Age 21: (March, 1989) independent. were not able to take care of me. I Independence had to return home. Since we were In 1987 I had such a great experi- moving to New Jersey in April, I ence canoeing in Northern Ontario Everybody thinks about the enrolled at St. Petersburg Junior with Wilderness Inquiry, I decided to future. We all hope and try College and took a course in creative go again this year....It’s always a to plan for a better life. What writing which I enjoyed very much. great experience for me. I liked being that means to each of us will Since New Jersey was a lot closer with different people. I find it so vary. Iam no different and to Pittsburgh than Florida, we interesting — home is so boring. I spend a lot of time thinking decided to wait until we were in New like being in a different environ- about my future. Jersey to have the pump put in. On ment.... That first night, we slept in May 19th I had the operation and our tents on Sheila’s lawn... Nancy, stayed in Pittsburgh for observation. Dave and I were together in the The medication helped my arms and canoe and they kept rocking it until it Age 24: (September, 1992) legs became looser. We returned tipped over — it turned out to be fun. The Future home with high expectations. We did it three times... That night Unfortunately, the catheter What does the future hold? after dinner, Dave came up with the Everybody thinks about the future. “kinked” and the medication stopped idea of giving me a drink witha We all hope and try to plan for a getting into my system. I had to go squirt bottle used by cyclists — it better life. What that means to each into the Robert Wood Johnson worked! I liked it right away.... We of us will vary. I am no different Hospital in New Jersey to have it had five portages in one day.... I felt and spend a lot of time thinking fixed. When it started working very good about this trip. I thought I about my future. Thinking about again, my body started relaxing, was becoming quite independent of finishing my education so I can get a however, the tenseness seemed to go my parents. I had flown to and from job. Thinking about developing the into my face and I was having even Minneapolis without them. I thought skills so can live on my own, with more difficulty opening my mouth. this was a good start in getting ready COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 This created more tension at home as What does the future hold? able to communicate with everyone, we planned for the fall. My hope Where to, from here? If you have even to the point of being dropped was to return to Edinboro. However, any thoughts about how I can get off at the “Gap” and asking the since I was having difficulty we had better control of my body, I would saleswoman for “Jeans please, size to look for other alternatives. We like very much to hear from you. 26-32”. found a transitional living centre that His improved communication seemed as if it might be a good place skills also allowed him to attend a to learn independent living skills. Bible Study group in Princeton and Events in Andrew's life I had also enrolled in a two-week make a whole new group of friends since 1992 augmentative communication course totally on his own. at the Temple University Summer Andrew was so excited about Institute. It was great and I learned a being accepted into the Gold Crest lot about the computer. I made new Co-op in August, 93. He really September 92 friends who were dealing with their believed and had the confidence to Andrew returned to Edinboro but did physical disabilities and still doing have a recurrent bout of pneumonia live on his own. He demonstrated great things, and they had good which necessitated his return home. He this admirably in the preparation he people take care of me. I came home quickly recovered and immediately gave to his interview for Gold Crest excited about going back to began taking courses at the local com- and in the capable way in which he Edinboro and convinced that that munity college. responded as questions were asked was what I wanted to do. However, during his initial meeting with the January 93 I still had this problem with the Gold Crest committee. Andrew Back to Edinboro. Andrew was so tenseness in my jaw and the biting. determined to be independent — two wanted the independence to direct We went to ISAAC in Philadel- weeks later he was back home with his own care, to return to the Univer- phia. It was great to see old friends pneumonia. sity and to complete his degree. again. It was great to listen to Mike Unfortunately, Andrew’s dream August 93 Williams and hear what they are never did get realized. The Co-op at Accepted into the Gold Crest Co-op doing to make the world better for the time of his death still had not in Toronto. disabled people. It made me even received government approval to go more determined than ever to go February 94: ahead and Andrew died from pneu- back to Edinboro. But still my body Moved to Toronto monia at Participation House in would not cooperate. The tenseness Brantford four days after his parents April 94 in my jaw was getting worse and I left him there for respite care. Operation for G.I. tube to im- was having some very bad bites. I prove his nutrition and lessen made a decision to stop the baclofen chances of aspiration pneumonia. I was receiving. While we were We have heard about the events in reducing the amount of baclofen I May 94: Andrew's life and his thoughts about was receiving, I could feel the Pneumonia those events. We turn now to some tenseness return to my arms and my tributes to Andrew. All of them reflect July 94 legs but my jaw didn’t get much the profound effect this young man Pneumonia recurred. better. That made me very worried had on the lives of those around him. On July 7th, about the future. Andrew passed away. I went to see the doctor in Phila- delphia to have botulism toxin August, 94 injected into the muscles in my An Update from Andrew's Tributes to Andrew cheeks. This did relax my jaw and I Mother, Francine was able to return to Edinboro. I While Andrew was attending A Tribute from Rev. Gregory at was sure that was where I wanted to Edinboro University, he was asked Andrew’s Funeral. be, but I got pneumonia and had to to be a Beta Tester for the “Libera- Ihave lived arather fortunate return home before school even tor”. He was so excited right from life; my position as a priest and my started. the beginning. His speech output improved dramatically and he was COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 7 travels have allowed me to meet was doing. Whether this was study- all kinds of people who do all ing at Edinboro University, whether kinds of incredible things. And in this was on a canoe trip with Wilder- We wish Andrew had had longer to those moments, I am not only awed, ness Inquiry, whether this was sitting discover where his life would lead. We but challenged and moved to ask around the pool with friends and know he would have accomplished deeper questions about my life, my family, whether this was being even more! We also know there would journey, my flight. One of those together at Christmas, New Year's have been many disappointments who stood out for me is Andrew Eve, sitting by the river, cutting along the road. His last few months in Murphy—for to meet him, to talk down a Christmas tree or being out Toronto, hoping to live in an inde- with him, to be with him was to with his cousins in downtown pendent apartment, were filled with recognize that you were in the Montreal; this was when Andrew frustratiofno r Andrew and his mother presence of aman who had done was happiest. Each of you affected and for the other persons waiting to incredible things-—but also one his life, just as he affected each of move into the promised apartments who challenged and moved us to our lives. with attendant care. Government ask deeper questions about our own delays were continuously thwarting Thoughts About Andrew by life, our own journey, our own flight. their plans. It is difficult not to notice Kari Harrington Andrew’s journey has come to an the different positions being taken by end; too fast, too soon, with so (Kari is a former Associate Editor of the church and the state, during many miles and promises yet to CommunicatingTogether) Andrew’s last year. keep. While his sudden death Although I met Andrew at many The church has been there for saddens all of us, it is his life, his different Blissymbols meetings in Andrew and his family, to celebrate wonderful life, that stands before us the early days of Blissymbolics, I and support Andrew’ s living. It was as a powerful witness of the power never really had the opportunity to there as well, to honour his life and of God at work in the world. get to know him. We were often at help his family as they grieved their Blue Mountain Camp at the same loss. The state, on the other hand, as time, but somehow, the girls never Andrew's Father, Mark, reflect- represented by government policy and ing on Andrew's Life got to know the boys that well! It institutional attitudes, supported wasn’t until Andrew began writing “Life is difficult”. This is the Andrew’s existence but gave minimal the Family and Community column first sentence from a well known support to the quality of his life. in our publication, Communicating book entitled “The Road Less The increasing measures of Together, that I learned a little more Travelled”. The author tells us that restraint in governmental expenditures about him. only when we accept that life is are having a profound effect upon the I always read Andrew’s column difficult, can we deal with the lives oft hose with severe disabilities. first because he did so many interest- difficulties we face in a positive We have a long way to go to ensure ing things, that were fun to read. manner. If we expect life to be easy, that, in the future, young people like I finally had a chance to have my then we have great difficulty in Andrew will have the opportunity to first conversations with Andrew dealing with the problems and spend participate in the life experiences their when he came to Participation a lot of time grumbling and com- accomplishments lead them to expect House, Markham, for a short stay. plaining. When Andrew and I first and we would wish for them. He had his Liberator and I, my read this sentence, he had a lot of Andrew’ s writings tell us much about Epson, which worked out very well difficulty understanding why life the difficulties he and others with his for both of us. I learned how he felt should be difficult. Unfortunately, no degree of disability must face and the about things and I was able to tell matter how much we discussed it, I experiences that can bring joy and him my point of view. I wish there was unable to explain to him ina balance to their lives. He has given us had been time for us to talk more. I satisfactory manner why the good the knowledge, and hopefully the will, admired his determination and Lord would want life to be difficult. to help others with similar challenges. courage so much. We will all miss All Andrew wanted was for We will remember! him, but we will remember him people to be happy in doing what they wanted to do. All Andrew always. wanted was to do what everyone else § 8 COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 A Tribute To A Friend KRISTINA ARENA tis with great honour and yet knew he had moments of sadness, I life and he would convey his atten- with great sadness that I was always amazed at his determina- tiveness with those beautiful eyes. stand before you today to pay tion to achieve the most he could in In talking about Andrew, I have to tribute to Andrew and his family. any given situation. He seemed to talk about his family. Andrew had a On Thursday I lost a dear friend have inherited this trait from his very. very special family. Not only did who was very special to me. There is parents. I’m sure many of us here his family provide him with the best so much history between Andrew, his today have wondered if under similar care possible, they also provided him family and myself that it 1s difficult to circumstances we would have had the with so many opportunities to do know where to begin. same inner strength that Andrew things that most of us in the “able- Andrew and I met 14 years ago at showed in dealing with his physical bodied” world take for granted — his school. Little did I know that the challenges. swimming, canoe trips, riding on the relationship with Andrew, his family He and I were both strong believ- back of his dad’s bicycle, ferris wheel and myself would impact on my life so ers in Fate, and perhaps it was fate rides, boat rides, sleeping on the significantly. that Andrew was able to return to the Thompson’s boat, concerts, theatre, He and I quickly became members city and people he so loved, through football games, baseball games and so of the Mutual Admiration Society — his mom and dad’s tremendous much more. mutual admiration for one another in support during this transition, in what our case. I remember being attracted to was to become the last 5 months of I remember being attracted Andrew’s eyes which seemed to dance his life. I’m grateful that during this to Andrew’s eyes which when you spoke with him and which time he and I were able to see more of followed your every move. He also seemed to dance when you one another, and that we were able to had a beautiful smile that lit up a spoke with him and which talk at length on many occasions. room. The special bond that developed followed your every move. I don’t think any of us here today between us remained throughout our can even begin to imagine what these years of friendship. On Sunday, Francine told me that last few days have been like for Mark, Andrew and I had many mutual Andrew, with his great sense of Francine, Mark Patrick, Jeff and Erin, interests but one of our common adventure, had wanted to go bungee- as Well as for Andrew’s grandparents interests stood above the rest and this jumping at one point! I can’t even and extended family. was our love for talking. And talk we imagine myself going bungee-jump- I know that all of us here today did! We had many many talks over the ing, but then there were many areas in share in their loss. In the days ahead, years, and I found his curiosity about which Andrew was more brave than I I hope that they can take some com- the world both endearing and a little was. He never saw himself as limited fort in knowing that although Andrew intimidating. He had this wonderful through his physical disability and I has moved beyond us physically, his knack for asking very direct questions- attribute his belief that he could do spirit lives on in all of us whose lives which left me momentarily speechless anything to his parents’ willingness to he touched so profoundly. on more than one occasion! For those involve him in so many activities and I would like to thank Francine and of you who know me, you know that adventures. Mark for having given me an opportu- this is no small feat. I think it is significant that wher- nity to be such a significant part of Francine would often find us with ever Andrew went he forged bonds of Andrew’ life. mischievous grins on our faces. She friendship with the people around him I will miss so many things about was usually curious what we had and those who cared for him. I believe him. Yet, I take comfort in knowing talked about to which I would laugh- this speaks to his charm and personal- that a place in my heart will always ingly reply” Oh...things”. Our laughter ity. Obviously, his “dancing eyes” and belong to the memories I have, of the was merely a reflection of the joy quick wit had an impact on many times I spent with Andrew and his Andrew and I experienced when we others besides myself. family. I trust that those memories spent time together. Aside from being Andrew was the most courageous will glow continuously like a beacon a good communicator Andrew was a person I ever met! He faced so many of light within me. great listener. On many occasions | challenges on a day to day basis that On behalf of us all, may Andrew would talk to him about things in my most of us will never face. Although I rest in peace. COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 9 Yucks & Wows! NOLA MILLIN For this issue, we have two Yucks & Wows. The first Wow is an article by Anne Bancroft, a correspondenftor the Minneapolis Star Tribune, that appeared Caged Bird in her July 22 Minnesota Journal column. It reflects how a relative I was like a caged bird. stranger was profoundly affected by her brief contact with Andrew Murphy to sheltered from the risk of being hurt, whom this issue is dedicated. Closed off from getting near to others, Second, 1 am going to share a poem I Protected from the surroundings. wrote a few years ago that I think ties into our theme of aging perfectly. It You had always been a familiar stranger. talks about the process of a relation- I wasn’t sure of your intent, ship. Relationships change with age as Frightened as you approached, the two individuals grow and develop a Timidly, I came nearer to the edge of my cage. trust with each other. In my mind, time only enhances the bond between you and You opened the door and watched me. your best friend. Remember, dear readers, | am No fast moves were made to startle me, hoping to hear about your Yucks & Nor did you lure with persuasions, Wows in time for the December issue. Instead you allowed me to venture out. You did not grab and pull at me. Adventure — Wilds Provide a Gently speaking and assuring me, Lesson in Life: That you would protect me, ANNE BANCROFT So on your hand, I came. Several years ago, my life was You taught me how to trust. touched in a profound way. My job For you wouldn’t harm me, was to introduce a 19-year-old man When I share intimate thoughts. named Andrew to the wilderness, Nor did you laugh and toss me about. giving him the basic tools to enjoy the portages and lakes of the north. You proceeded to teach me how to be free. But it was Andrew who would do the I gained confidence to fly, teaching. For his first trip away from Knowing I could share my dreams and failures, home, Andrew chose an adventure For you will be there when I need a refuge. with a group of strangers in a program called Wilderness Inquiry. You are now my best friend. He came with a spirit of adventure I don’t have to be held onto any more, — and cerebral palsy. Andrew, who I am able to soar above the clouds, expressed himself using a word To reach the height of my potentials. board, enthusiastically navigated us through a puzzle of islands on a lake, I thank you for believing in me. and gently encouraged others to use For giving me courage to rid myself from my past fears, his board. Unable to swat And seeing that there can be protection with another, mosquitoes, dab sun block on burned Just like there was protection within my cage. ears or turn over on the ground, Nola Millin Andrew participated fully nonetheless — and produced an indelible memory for me. 10 COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994

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- ‘, 5 . r4’ q || ‘ , | | | 4 | y | 7 y q . ; published by '~~ Sharing to Learn f . Cc ire COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 ISSN 0822-0638 EDITORIAL SHIRLEY McNAUGHTON & support of his family kept him in a sensitive and clear fashion PETER LINDSAY forever striving forward and achiev- around issues related to nutrition, hen our associate ing new goals. mobility, communication and medical editors team met last This issue of Communicating care. Alice Born describes how the March, the theme of Together then is dedicated to effects of aging may be experienced aging was supported unanimously. Andrew Murphy and his family. In earlier by those with severe physical The experiences of many of our our feature section, we share a disabilities and recognizes the psycho- friends were providing striking collection of Andrew’s and his logical and social, as well as the evidence of the differences and father’s writings throughout the physical stress that can accompany similarities of the aging process for eighties, as well as some messages loss of independence and control. We those with and without major physi- about Andrew, as his family and are reminded by Dr. Schwartz of how cal disabilities. Our attention was friends reflected upon his life. One those who are able-bodied can learn directed to life passages as well, of the Wows 1s an article by a young from those with disabilities, for often where we saw great differences in reporter who was profoundly af- they have arrived at life’s challenges the stages typically associated with fected by Andrew's courage and earlier and to a more severe degree aging. Little did we realize that those spirit even though she knew him for than those without disabilities. of us who knew Andrew Murphy only a few days. Kari Harrington, a Geb Verburg deals with aging and would be forced to recognize the former associate editor of Commu- life transitions through examining severe impact of aging upon this nicating Together, also writes of changes in the amount of control we young man whom we had known Andrew's impact on her. have. Through describing the situa- since he was six years old. Andrew tions of two persons with whom he died on July 7, 1994 at age twenty- has worked, Geb examines how six. That his body would succumb to Once in a while we meet someone different motivations can lead to pneumonia at such a young age who stands out from the rest of different consequences as control is saddened us greatly. the flock; someone who flies acquired or lost. He points out how the If we measure Andrew’s life by faster and farther and higher “firsts” in each child’s life can come the same yardstick as those who are than we ever thought possible, later for children with disabilities and able-bodied, we would have to and helps us to do the same. can sometimes be missed completely conclude that he moved through few with the concomitant lost opportunity Rev. Gregory E. S. Malovetz of life’s typical passages. We would for learning. In Consuming Technol- Pastor, St. Charles Borromeo, also realize it was not for lack of Skillman, N.J. ogy, Robert Haaf describes the need to trying. Andrew struggled all of his consider the changing communication life for independence but his severe strategies needed as individuals age physical and speech impairments The Perspectives by Dr. Brian and the importance of the individual placed strong obstacles in his path. Schwartz and Alice Born provide us assuming increasing responsibility for His untimely death as a young man with valuable information regarding decision-making regarding the most was especially tragic as he seemed to the health, physical and psycho- appropriate method for communica- be within grasp of achieving the social issues relating to physical tion in a given situation. In independent living situation that he disability and how these can impact SymbolTalk there is further attention so desired in his life. upon aging. Dr. Brian Schwartz given to the growing control that AAC Fortunately we have his many shares the knowledge he has gained users should have as they approach articles in Communicating To- through his medical practice in adulthood. gether that chronicle, in his own which, over the years, he has served When all is said and done, how- words, Andrew's struggles with life‘s over twenty patients with cerebral ever, it is through observing the daily challenge. Through these articles, palsy as well as a number of persons events in the lives of persons with we can look back on the unique life with other disabilities such as para- challenges similar to those of Andrew passages of this remarkable young plegia, muscular dystrophy and Murphy that we come face to face man. His determination and the multiple sclerosis. He offers advice with the aging process! As we who bo COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 are able-bodied consider our own details of a daily excursion or a week- prepare them and support them if they, lives and those of our children and end visit, or managing money and like Andrew, do begin to experience grandchildren, we think of the many planning meals without the opportunity the “signs of aging” in their twenties? life passages that we all experience — of handling the currency or preparing We have learned from Annalu Waller walking independently, eating inde- the food, or mastering the strategies and Kari Harrington (Communicating pendently, staying at nursery school required to use communication tech- Together, March, 1994) that even the without a parent, first day of kinder- nology, or managing many pieces of most successful and confident indi- garten, first “overnight” with a friend, complex technology, or coordinating viduals with cerebral palsy can be first stay at camp for a week or a the input of rehabilitation team mem- quickly devastated by incapacitating month, first date, beginning and bers or arriving at independent deci- ailments that make an unexpected completing high school and univer- sions when family, professionals and appearance. Frequently, professionals sity, beginning a career, living away agencies all have input and varying lack the knowledge about how to deal from the family home, marriage, agendas and degrees of control? Do we with these “mysterious” conditions becoming a parent, getting promo- recognize and applaud the strength it and our lack of knowledge compounds tions, changing jobs, retiring, becom- requires to follow a path no one else in the whole situation. ing a grandparent, dying in old age. one’s social environment is taking? Finally, even if a family has the We know these passages will be And who will provide the support good fortune to find unusually helpful experienced very differently by those that is needed? As long as they are in professionals for their child during his with severe physical impairments and school, most educational systems do or her school years, all of that support their families. Many may be experi- try to provide special assistance to the can disappear as soon as the individual enced only with great stress or may be developing child with profound physi- leaves school. One of the parents we missed altogether. The question we cal disabilities. Speech pathologists, interviewed to gather information must ask is how those who have special educators, occupational thera- about their experiences with profes- disabilities and those close to them pists gather to help the child and his or sionals (see June, 1994 issue) is can accept and value the different life her family. The support they provide is representative of the many parents patterns associated with physical often restricted to the technical features who are in exactly that position. At limitations. The achievements will be ~ of the child's world — communication the time of the interview, her daughter had just used up her school-age credits different. But surely they require as systems, seating or adaptations to the much or more determination, self curriculum that may be needed. They and support was terminated. She was discipline, competent use of control do not focus on supporting the overall essentially sent home where, without and energy as is needed by the able- psychological well-being of the chil- the daily stimulation of school, she bodied person. Surely, they also dren and the milestones they are trying was rapidly losing many of the skills deserve equal or greater recognition. to achieve in their unique passage into she had steadfastly acquired. Her For those who are able-bodied, the adulthood. They do not focus on parent, eager for something to provide continued stimulation for her daughter community in which they live sup- preparing the environment so that it was resolutely searching for alterna- ports and celebrates their life transi- honours and celebrates the unique tions. With our strong emphasis upon passages and accomplishments the tive programs, mostly to no avail. integration, those with disabilities child is achieving. Another parent has responded by may lack a community which can Nor do they necessarily adjust their forming a group to build supportive share and rejoice in their particular normal practices to a potentially unique housing. The former parent was life passages. As we considered this and possibly dramatically shortened considering moving to a location editorial, we could not refrain from developmental pathway. Andrew's life where there might be a program or a asking ourselves what is done by teaches us that the journey may indeed place for her daughter. Both were schools and agencies to recognize the be very short. How should typical saddened and perplexed by the sudden unique life passages of those with expectations be altered? What things loss of support for their daughters. physical disabilities. What do we do must become priorities? As we failed As we pay tribute to Andrew to foster an appreciation and under- to do in Andrew's case, we somehow Murphy and his family we hope our standing of the differences and must learn how to convince bureaucra- readers will be motivated to consider similarities in aging between those cies that they don't have the luxury of aging as it is experienced by us all and with and without disabilities? How leisurely decision-making and deferred celebrate the different pathways as well as the passages we all share. spontaneously do we recognize the action. unique passages such as directing Moreover, what do we do for the attendants, or pre-planning minute individuals themselves? How can we COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 Celebrating the Life of Andrew Murphy Those who have been readers of Many changes are needed before the Communicating Together since the hopes of those with severe disabilities eighties will remember the many articles can be fully realized. Many compro- by Andrew Murphy and his dad, Mark. mises had to be made by Andrew — In all, they wrote eighteen pieces for the many more than we would wish for a Family and Community section. On July young person dreaming of his future. As 7, 1994, Andrew Murphy died of pneu- we consider aging and life’s passages in monia, at age twenty-six. We share his this issue, we are struck with the very family’s deep sense of loss. short life Andrew had and the many We treasure the long association we transitions which he missed. His fragile had with Andrew and we wish to cel- physical condition was always challeng- ebrate and remember his life through ing his desire for accomplishment and dedicating this issue of Communicating greater independence. Nonetheless, Together to his memory. In so doing, we Andrew’ s keen mind and strong resolve, honour and pay tribute to his mother, in partnership with his family’s determi- Francine, his father, Mark, his brothers, nation, kept him forever trying to reach Andrew with his family: Mark and Jeffrey and his sister, Erin, for his goals. Along the way, he learned a mother, Francine, father, Mark, their caring and their understanding of great deal and frequently shared his brothers Patrick & Jeff and sister Erin. Andrew’ s aspirations. As we reflect on thoughts with us. We feel the best way to Andrew’ s life through his writing, we Christmas, 1992 honour Andrew ts to look back and urge all individuals who know the share excerpts from the articles he wrote difficulties imposed on those with severe with his father, beginning in 1982 with speech and physical impairments to our Inaugural Edition. strive for a more humane and sensitive society. Events to Remember when I was away and we were doing I couldn’t go, and when I said yes, something different every day, but they said they felt I should under- Age 14: (Fall, 1982) after I got home from camp it was stand and be quiet. But I was still Introduction boring on the days we didn’t do angry and I still felt like screaming. i, my name is Andrew anything special. But since then, Finally, my mother said it was fine Murphy. I am 14 years when my brothers and sister do and that I could scream if I wanted old and have cerebral things I can’t do and I have to stay to; that it was natural for me to want palsy. I have been using Blissymbols quiet and maybe watch TV for a few to scream when I was angry. After to talk to my family and teachers for hours, I joke with my mother and twenty minutes of screaming, I felt a almost eight years. I can’t control my say, “Now it’s my turn to ‘vege’.” little better. hands, so I use eye pointing to show which symbol I want to use. I like Age 15: (Winter, 1983) Age 16: (February, 1984) going to the theatre, the ballet and Anger Loneliness ; the symphony. Recently, I saw (Re hockey game at Maple Leaf Gardens) I went to stay at the Ontario Evita.... My dad and I want to tell I was very excited to go myself, Crippled Children's Centre Hospital teachers and other people what it’s but my parents explained to me that I when my parents went away for one like for families with children who couldn’t go because there were too week. It was a very hard time for me. can’t speak... We want to make sure many steps and it was too difficult to Because I am not able to relax in a people understand the problems we get my wheelchair up there. So I got new situation, I become very tense have with these other ways of angry and started to scream. My and I was unable to eat with all the communicating and some of the fun parents wondered why I was scream- different staff looking after me. I things that happen when we try to ing. They asked if I understood why tried to talk to the staff, I tried to get use them.... (Re camp) It was fun COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 their attention by making noise, but another year of learning and working Age 18: (June, 1986) it just didn’t work. Because I com- on the computer. I am going to spend Integration municate only with my eyes on my time learning to read. In the last issue, I mentioned that Bliss board, it takes more time for I was going to have an operation to people to talk to me or listen to me. I eliminate my drooling. Well, I had it Age 17: (June, 1985) was mad and I was lonesome, but I done over the Christmas holidays, Skiing had visitors that cheered me up and and while I was very uncomfortable Everyone else in my family skis brought me food. My teachers and initially, the operation was a success. and I have found it frustrating since I friends came. Now, my face is always dry, and I wasn’t able to join them. I communi- feel much more comfortable. You cated this feeling to one of my may ask what this has to do with Age 16: (September, 1984) “special friends” and much to my communication. Well, a lot of Helping surprise, she arranged for me to go communication comes from “body People who are permanently skiing on my birthday.... She ar- language” and “expression”. Look- “disabled” are generally the ones ranged for the ski instructors to take ing better, as I do now, encourages being helped by others. In each of me up and down the hill on the ski other people to want to interact with our lives, however, we all need help patrol toboggan. It was a terrific me.... | go out of my class for handi- from someone at certain times and experience and a real thrill. capped students for three periods everyone is capable of helping each day...[ enjoy being with the another person in one way or an- non-handicapped kids, although they other. Being able to help a friend Because my aunt and uncle are very shy and have not taken the gives us anice feeling. Recently, a took the time, I was able to time to learn how to communicate good friend of mine, whom I had with me. communicate really well with met as a volunteer at school, had to be admitted to hospital.... When I my Blissymbols and eye point- first went to visit her I felt strange ing. Not once during the week Age 18: (December, 1986) and uncomfortable with the other was I frustrated or unable to Friends patients. Then I became used to them express my thoughts. It was a There are not many friends and their different ways and forgot terrific experience for me. outside my family whom I can talk about myself and was able to relax to. And after all, there are only and make my friend happy each time certain things you can talk about I went.... My brothers and sister have with your family, especially your a lot of friends who are often over at parents. In Toronto, I have a few Age 18 (March, 1986) our house.... I wish they would take Moving good friends who spent lots of time the time to learn to communicate talking with me. I enjoyed these long Along with my family, I moved directly so that I would be able to talks and miss them. My goal this to Clearwater, Florida, during the answer their questions and ask them year is to make new friends in Canadian Thanksgiving weekend. questions about what they are doing. Florida with whom I can communi- We have a very nice home, and my This would certainly help me enjoy Gate: bedroom is on the ground floor my time when they are around. And, which makes it much easier for my who knows? Maybe sometime in the mother to take care of me. I like my Age 19 (June, 1987) future I would be able to help them school very much.... My teacher Communication by being able to communicate with Carol is very kind and interested in I just celebrated my nineteenth them. learning how to use the computer birthday. It was a good time to think Because my aunt and uncle took with nonspeaking people.... I miss all back about how my ability to com- the time, I was able to communicate my friends very much. It gets quite municate has changed over the years. really well with my Blissymbols and boring since I don’t have friends to At the beginning, the fact that I eye pointing. Not once during the take me out on the weekends. If I could not speak made communicat- week was I frustrated or unable to get to know more people I can do ing very difficult and frustrating. It express my thoughts. It was a terrific more things and enjoy what Florida was a guessing game. People, mostly experience for me. I had a wonderful has to offer. my parents, had to guess what I was time.....Now it’s back to school and COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 thinking, and I had to react in a to go away to college. Now that ’'m help of course. Thinking about positive or negative manner to let a senior, this is very important to me. making new friends and staying in them know if they were on the right I feel more mature and I know more touch with my old friends. Thinking track. Thankfully, Blissymbols were about life. about seeing more of the world and discovered, and I started using them how I can make it a better place. back in 1974. I hate to think what Last year I successfully com- Age 22: (March 1990) would have happened if they had not pleted the fall semester at Edinboro (written by Kari Harrington after been available. My experience with University. On the way home for receiving a letter from Andrew) Blissymbols has been very positive, Christmas, I spent a few days in This year Andrew is taking three and I was able to grow along with the Pittsburgh Children’s Hospital being courses, Philosophy, Introduction to system and develop a full range of tested on a new drug called baclofen Art, and Computers, as well as communication abilities. This al- to see 1f it would help control the spending two hours a day on his new lowed me to participate in and enjoy tenseness and spasticity in my body. communication system and extra life a lot more. Now when I look at After the test, I thought it would writing classes to improve his my board, I see that there are no work. We then had to decide when I writing skills. ... There must be longer Blissymbols on it. It is com- would have this pump implanted in many times when Andrew feels pletely filled with words and with the my abdomen which would adminis- exhausted, but in his letter he writes alphabet and numerals. We update ter the drug through a catheter to my about how it 1s all worth it. He loves the words on the board periodically, spinal cord. Edinboro University and the great and this gives me a chance to com- In January, I returned to school people there who are so caring and municate effectively with those looking forward to the challenges of he loves the freedom of being away people who take the time to interact anew year. Unfortunately, my body and doing anything he wants. This with me. didn’t cooperate. I became tense balances all the responsibility he has, very often and was biting my mouth and makes him feel very adult and so badly that the people at Edinboro Age 21: (March, 1989) independent. were not able to take care of me. I Independence had to return home. Since we were In 1987 I had such a great experi- moving to New Jersey in April, I ence canoeing in Northern Ontario Everybody thinks about the enrolled at St. Petersburg Junior with Wilderness Inquiry, I decided to future. We all hope and try College and took a course in creative go again this year....It’s always a to plan for a better life. What writing which I enjoyed very much. great experience for me. I liked being that means to each of us will Since New Jersey was a lot closer with different people. I find it so vary. Iam no different and to Pittsburgh than Florida, we interesting — home is so boring. I spend a lot of time thinking decided to wait until we were in New like being in a different environ- about my future. Jersey to have the pump put in. On ment.... That first night, we slept in May 19th I had the operation and our tents on Sheila’s lawn... Nancy, stayed in Pittsburgh for observation. Dave and I were together in the The medication helped my arms and canoe and they kept rocking it until it Age 24: (September, 1992) legs became looser. We returned tipped over — it turned out to be fun. The Future home with high expectations. We did it three times... That night Unfortunately, the catheter What does the future hold? after dinner, Dave came up with the Everybody thinks about the future. “kinked” and the medication stopped idea of giving me a drink witha We all hope and try to plan for a getting into my system. I had to go squirt bottle used by cyclists — it better life. What that means to each into the Robert Wood Johnson worked! I liked it right away.... We of us will vary. I am no different Hospital in New Jersey to have it had five portages in one day.... I felt and spend a lot of time thinking fixed. When it started working very good about this trip. I thought I about my future. Thinking about again, my body started relaxing, was becoming quite independent of finishing my education so I can get a however, the tenseness seemed to go my parents. I had flown to and from job. Thinking about developing the into my face and I was having even Minneapolis without them. I thought skills so can live on my own, with more difficulty opening my mouth. this was a good start in getting ready COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 This created more tension at home as What does the future hold? able to communicate with everyone, we planned for the fall. My hope Where to, from here? If you have even to the point of being dropped was to return to Edinboro. However, any thoughts about how I can get off at the “Gap” and asking the since I was having difficulty we had better control of my body, I would saleswoman for “Jeans please, size to look for other alternatives. We like very much to hear from you. 26-32”. found a transitional living centre that His improved communication seemed as if it might be a good place skills also allowed him to attend a to learn independent living skills. Bible Study group in Princeton and Events in Andrew's life I had also enrolled in a two-week make a whole new group of friends since 1992 augmentative communication course totally on his own. at the Temple University Summer Andrew was so excited about Institute. It was great and I learned a being accepted into the Gold Crest lot about the computer. I made new Co-op in August, 93. He really September 92 friends who were dealing with their believed and had the confidence to Andrew returned to Edinboro but did physical disabilities and still doing have a recurrent bout of pneumonia live on his own. He demonstrated great things, and they had good which necessitated his return home. He this admirably in the preparation he people take care of me. I came home quickly recovered and immediately gave to his interview for Gold Crest excited about going back to began taking courses at the local com- and in the capable way in which he Edinboro and convinced that that munity college. responded as questions were asked was what I wanted to do. However, during his initial meeting with the January 93 I still had this problem with the Gold Crest committee. Andrew Back to Edinboro. Andrew was so tenseness in my jaw and the biting. determined to be independent — two wanted the independence to direct We went to ISAAC in Philadel- weeks later he was back home with his own care, to return to the Univer- phia. It was great to see old friends pneumonia. sity and to complete his degree. again. It was great to listen to Mike Unfortunately, Andrew’s dream August 93 Williams and hear what they are never did get realized. The Co-op at Accepted into the Gold Crest Co-op doing to make the world better for the time of his death still had not in Toronto. disabled people. It made me even received government approval to go more determined than ever to go February 94: ahead and Andrew died from pneu- back to Edinboro. But still my body Moved to Toronto monia at Participation House in would not cooperate. The tenseness Brantford four days after his parents April 94 in my jaw was getting worse and I left him there for respite care. Operation for G.I. tube to im- was having some very bad bites. I prove his nutrition and lessen made a decision to stop the baclofen chances of aspiration pneumonia. I was receiving. While we were We have heard about the events in reducing the amount of baclofen I May 94: Andrew's life and his thoughts about was receiving, I could feel the Pneumonia those events. We turn now to some tenseness return to my arms and my tributes to Andrew. All of them reflect July 94 legs but my jaw didn’t get much the profound effect this young man Pneumonia recurred. better. That made me very worried had on the lives of those around him. On July 7th, about the future. Andrew passed away. I went to see the doctor in Phila- delphia to have botulism toxin August, 94 injected into the muscles in my An Update from Andrew's Tributes to Andrew cheeks. This did relax my jaw and I Mother, Francine was able to return to Edinboro. I While Andrew was attending A Tribute from Rev. Gregory at was sure that was where I wanted to Edinboro University, he was asked Andrew’s Funeral. be, but I got pneumonia and had to to be a Beta Tester for the “Libera- Ihave lived arather fortunate return home before school even tor”. He was so excited right from life; my position as a priest and my started. the beginning. His speech output improved dramatically and he was COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 7 travels have allowed me to meet was doing. Whether this was study- all kinds of people who do all ing at Edinboro University, whether kinds of incredible things. And in this was on a canoe trip with Wilder- We wish Andrew had had longer to those moments, I am not only awed, ness Inquiry, whether this was sitting discover where his life would lead. We but challenged and moved to ask around the pool with friends and know he would have accomplished deeper questions about my life, my family, whether this was being even more! We also know there would journey, my flight. One of those together at Christmas, New Year's have been many disappointments who stood out for me is Andrew Eve, sitting by the river, cutting along the road. His last few months in Murphy—for to meet him, to talk down a Christmas tree or being out Toronto, hoping to live in an inde- with him, to be with him was to with his cousins in downtown pendent apartment, were filled with recognize that you were in the Montreal; this was when Andrew frustratiofno r Andrew and his mother presence of aman who had done was happiest. Each of you affected and for the other persons waiting to incredible things-—but also one his life, just as he affected each of move into the promised apartments who challenged and moved us to our lives. with attendant care. Government ask deeper questions about our own delays were continuously thwarting Thoughts About Andrew by life, our own journey, our own flight. their plans. It is difficult not to notice Kari Harrington Andrew’s journey has come to an the different positions being taken by end; too fast, too soon, with so (Kari is a former Associate Editor of the church and the state, during many miles and promises yet to CommunicatingTogether) Andrew’s last year. keep. While his sudden death Although I met Andrew at many The church has been there for saddens all of us, it is his life, his different Blissymbols meetings in Andrew and his family, to celebrate wonderful life, that stands before us the early days of Blissymbolics, I and support Andrew’ s living. It was as a powerful witness of the power never really had the opportunity to there as well, to honour his life and of God at work in the world. get to know him. We were often at help his family as they grieved their Blue Mountain Camp at the same loss. The state, on the other hand, as time, but somehow, the girls never Andrew's Father, Mark, reflect- represented by government policy and ing on Andrew's Life got to know the boys that well! It institutional attitudes, supported wasn’t until Andrew began writing “Life is difficult”. This is the Andrew’s existence but gave minimal the Family and Community column first sentence from a well known support to the quality of his life. in our publication, Communicating book entitled “The Road Less The increasing measures of Together, that I learned a little more Travelled”. The author tells us that restraint in governmental expenditures about him. only when we accept that life is are having a profound effect upon the I always read Andrew’s column difficult, can we deal with the lives oft hose with severe disabilities. first because he did so many interest- difficulties we face in a positive We have a long way to go to ensure ing things, that were fun to read. manner. If we expect life to be easy, that, in the future, young people like I finally had a chance to have my then we have great difficulty in Andrew will have the opportunity to first conversations with Andrew dealing with the problems and spend participate in the life experiences their when he came to Participation a lot of time grumbling and com- accomplishments lead them to expect House, Markham, for a short stay. plaining. When Andrew and I first and we would wish for them. He had his Liberator and I, my read this sentence, he had a lot of Andrew’ s writings tell us much about Epson, which worked out very well difficulty understanding why life the difficulties he and others with his for both of us. I learned how he felt should be difficult. Unfortunately, no degree of disability must face and the about things and I was able to tell matter how much we discussed it, I experiences that can bring joy and him my point of view. I wish there was unable to explain to him ina balance to their lives. He has given us had been time for us to talk more. I satisfactory manner why the good the knowledge, and hopefully the will, admired his determination and Lord would want life to be difficult. to help others with similar challenges. courage so much. We will all miss All Andrew wanted was for We will remember! him, but we will remember him people to be happy in doing what they wanted to do. All Andrew always. wanted was to do what everyone else § 8 COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994 A Tribute To A Friend KRISTINA ARENA tis with great honour and yet knew he had moments of sadness, I life and he would convey his atten- with great sadness that I was always amazed at his determina- tiveness with those beautiful eyes. stand before you today to pay tion to achieve the most he could in In talking about Andrew, I have to tribute to Andrew and his family. any given situation. He seemed to talk about his family. Andrew had a On Thursday I lost a dear friend have inherited this trait from his very. very special family. Not only did who was very special to me. There is parents. I’m sure many of us here his family provide him with the best so much history between Andrew, his today have wondered if under similar care possible, they also provided him family and myself that it 1s difficult to circumstances we would have had the with so many opportunities to do know where to begin. same inner strength that Andrew things that most of us in the “able- Andrew and I met 14 years ago at showed in dealing with his physical bodied” world take for granted — his school. Little did I know that the challenges. swimming, canoe trips, riding on the relationship with Andrew, his family He and I were both strong believ- back of his dad’s bicycle, ferris wheel and myself would impact on my life so ers in Fate, and perhaps it was fate rides, boat rides, sleeping on the significantly. that Andrew was able to return to the Thompson’s boat, concerts, theatre, He and I quickly became members city and people he so loved, through football games, baseball games and so of the Mutual Admiration Society — his mom and dad’s tremendous much more. mutual admiration for one another in support during this transition, in what our case. I remember being attracted to was to become the last 5 months of I remember being attracted Andrew’s eyes which seemed to dance his life. I’m grateful that during this to Andrew’s eyes which when you spoke with him and which time he and I were able to see more of followed your every move. He also seemed to dance when you one another, and that we were able to had a beautiful smile that lit up a spoke with him and which talk at length on many occasions. room. The special bond that developed followed your every move. I don’t think any of us here today between us remained throughout our can even begin to imagine what these years of friendship. On Sunday, Francine told me that last few days have been like for Mark, Andrew and I had many mutual Andrew, with his great sense of Francine, Mark Patrick, Jeff and Erin, interests but one of our common adventure, had wanted to go bungee- as Well as for Andrew’s grandparents interests stood above the rest and this jumping at one point! I can’t even and extended family. was our love for talking. And talk we imagine myself going bungee-jump- I know that all of us here today did! We had many many talks over the ing, but then there were many areas in share in their loss. In the days ahead, years, and I found his curiosity about which Andrew was more brave than I I hope that they can take some com- the world both endearing and a little was. He never saw himself as limited fort in knowing that although Andrew intimidating. He had this wonderful through his physical disability and I has moved beyond us physically, his knack for asking very direct questions- attribute his belief that he could do spirit lives on in all of us whose lives which left me momentarily speechless anything to his parents’ willingness to he touched so profoundly. on more than one occasion! For those involve him in so many activities and I would like to thank Francine and of you who know me, you know that adventures. Mark for having given me an opportu- this is no small feat. I think it is significant that wher- nity to be such a significant part of Francine would often find us with ever Andrew went he forged bonds of Andrew’ life. mischievous grins on our faces. She friendship with the people around him I will miss so many things about was usually curious what we had and those who cared for him. I believe him. Yet, I take comfort in knowing talked about to which I would laugh- this speaks to his charm and personal- that a place in my heart will always ingly reply” Oh...things”. Our laughter ity. Obviously, his “dancing eyes” and belong to the memories I have, of the was merely a reflection of the joy quick wit had an impact on many times I spent with Andrew and his Andrew and I experienced when we others besides myself. family. I trust that those memories spent time together. Aside from being Andrew was the most courageous will glow continuously like a beacon a good communicator Andrew was a person I ever met! He faced so many of light within me. great listener. On many occasions | challenges on a day to day basis that On behalf of us all, may Andrew would talk to him about things in my most of us will never face. Although I rest in peace. COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER. 1994 9 Yucks & Wows! NOLA MILLIN For this issue, we have two Yucks & Wows. The first Wow is an article by Anne Bancroft, a correspondenftor the Minneapolis Star Tribune, that appeared Caged Bird in her July 22 Minnesota Journal column. It reflects how a relative I was like a caged bird. stranger was profoundly affected by her brief contact with Andrew Murphy to sheltered from the risk of being hurt, whom this issue is dedicated. Closed off from getting near to others, Second, 1 am going to share a poem I Protected from the surroundings. wrote a few years ago that I think ties into our theme of aging perfectly. It You had always been a familiar stranger. talks about the process of a relation- I wasn’t sure of your intent, ship. Relationships change with age as Frightened as you approached, the two individuals grow and develop a Timidly, I came nearer to the edge of my cage. trust with each other. In my mind, time only enhances the bond between you and You opened the door and watched me. your best friend. Remember, dear readers, | am No fast moves were made to startle me, hoping to hear about your Yucks & Nor did you lure with persuasions, Wows in time for the December issue. Instead you allowed me to venture out. You did not grab and pull at me. Adventure — Wilds Provide a Gently speaking and assuring me, Lesson in Life: That you would protect me, ANNE BANCROFT So on your hand, I came. Several years ago, my life was You taught me how to trust. touched in a profound way. My job For you wouldn’t harm me, was to introduce a 19-year-old man When I share intimate thoughts. named Andrew to the wilderness, Nor did you laugh and toss me about. giving him the basic tools to enjoy the portages and lakes of the north. You proceeded to teach me how to be free. But it was Andrew who would do the I gained confidence to fly, teaching. For his first trip away from Knowing I could share my dreams and failures, home, Andrew chose an adventure For you will be there when I need a refuge. with a group of strangers in a program called Wilderness Inquiry. You are now my best friend. He came with a spirit of adventure I don’t have to be held onto any more, — and cerebral palsy. Andrew, who I am able to soar above the clouds, expressed himself using a word To reach the height of my potentials. board, enthusiastically navigated us through a puzzle of islands on a lake, I thank you for believing in me. and gently encouraged others to use For giving me courage to rid myself from my past fears, his board. Unable to swat And seeing that there can be protection with another, mosquitoes, dab sun block on burned Just like there was protection within my cage. ears or turn over on the ground, Nola Millin Andrew participated fully nonetheless — and produced an indelible memory for me. 10 COMMUNICATING TOGETHER VOL. 12, NO. 3/SEPTEMBER 1994

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