I was recently asked to inspire members of an audience who support individuals with developmental disabilities and mental health concerns. Jean Vanier (1998), the Canadian founder of the worldwide L'Arche movement, in his most recent book, Becoming Human, wrote of his belief that we are blessed to walk alongside the lives of individuals with developmental disabilities. It was a true privilege to tell my audience about some of the people I have met in my work as a psychiatrist who have graced my life and inspired me.
I told the audience that several weeks prior to my presentation, I had met a man while holding a psychiatric clinic in a town far from my hometown and my children. He was from a smaller town farther still from where either he or I were born. With scientific rigor, I had gathered in advance years of his documented testing and re-testing. This documentation told a story of this man's life, colored by chronic, intermittent aggression, noncompliance, a moderate degree of developmental disability, and a seizure disorder. As he walked into the assessment room, I felt at ease quickly as I watched his smile and felt the warmth and strength of his handshake. I was quickly inspired as he granted me the privilege of beginning to trust me, to the extent that in the first 15 minutes of our discussion, he explained:
that since the death of both of his parents over the past 3 to 4 years, he was very lonely; in his words, “all alone”
that he wanted to move to the larger town in which we were talking because “there ain't much shopping in the town where I live”
that he now “walked away” when teased and told me that “just about everybody in my town sometime when I was growing up had teased me”
that he did not know what phenytoin, phenobarbital, or quetiapine were (psychotropic drugs that he had been prescribed), but that “I sure want to know and I'd like to learn.”
Listening to this individual, I was inspired to have the confidence to tell his support team, after having the opportunity to watch many interdisciplinary teams across the region in which I live, collaborate together:
that the establishment of an objective monitoring system to track mental health signs and symptoms would likely confirm that he had an underlying bipolar disorder
that if we tapered and discontinued his phenobarbital (a sedating and disinhibiting anticonvulsant) and added a newer, more appropriate anticonvulsant, this would surely help
and that if his support team chose to wait patiently for a relatively short period of time, this individual would likely realize his vocational and residential dreams and perhaps pursue his ultimate goal of “going steady with a really pretty girl.”
The look in his eyes inspired me to dream that if all of this were to come true, he would not have to honor his Ukranian father, who prior to his death was a hard rock miner, by not crying in public; he would not have to speak with pride of “knocking a fellow out at the group home” in order to “make everybody scared of me so they wouldn't hurt me”; he could speak with greater pride of loving the New Jersey Devils (even though he could only afford a Toronto Maple Leaf t-shirt), of being the first to leave “the big house” (a congregate setting in which he had previously resided), and of having “lots and lots of friends.”
Following the conclusion of this clinic, I was impatiently waiting in an airport, ultimately hearing that my 6-hour wait arose from the fact, as the young pilot explained to me, that “the world has changed” (this was a short time after the tragic events in the United States). Thinking about my children, I bought a postcard that depicted the Terry Fox Memorial. Terry was a courageous young Canadean who, subsequent to being diagnosed with a malignancy requiring amputation of his right leg, set out to walk across Canada to raise funds for cancer research. From the postcard I learned that Terry ended his Marathon of Hope at mile 3,339 in Thunder Bay, Ontario, and that he died on June 28, 1981. As this was 20 years ago, I quickly felt old and then I felt young as I read what Terry Fox said prior to his death, which occurred at a younger age than my age now. “Dreams are made if people only try. I believe in miracles, I have to . . . because somewhere the hurting must stop.” The inspiration I felt reading that belief got me to my next stop, which was even farther from home.
As I fell asleep that night in a hotel, listening to the cold north wind announce the onset of winter in Northwestern Ontario, I thought fondly of going dancing several weeks earlier at an Eastern Canadian Celtic bar in our nation's capital. There, I watched a team of individuals who provide support to people with developmental disabilities and mental health concerns through an assertive community treatment model. I watched this team dance up a storm, and I was inspired by their personal pride and the themes of national pride as sung by the band. I was inspired by this team reminding those around them, teams from across the nation, that there were only two teams similar to theirs in North America and that they would only dance with members of other teams who would consider or had chosen not to exclude people with developmental disabilities from their treatment mandates.
Earlier on that same day (the day of the dance), I delivered a lecture at this convention with my team members who inspire me daily with their commitment to each other and those they support. I was inspired by hearing that a member of the audience from Queensland, Australia, who likes Molson beer (he had only tried one of many varieties and I, without prejudice, recommended Sleeman's instead), was looking forward to an introduction to Niagara wines (I countered with a recollection of a recent encounter with a beautiful, well-oaked Australian Chardonnay), and by his comment that he was most impressed with the degree of respect and dignity that sometimes is offered to people with challenging behavior and developmental disabilities in Ontario (I agreed).
While working at my next stop in a resource-scarce faraway place, I was impressed with the way life sometimes deals a winning set of cards. As I walked onto the Psychiatric Unit at the local hospital to attempt to assist in the support of an individual with a developmental disability, a rare genetic syndrome, and a current psychotic disorder, I watched the psychiatrist, who was there for a week, walk towards me. I was pleased to introduce our client's support team to a psychiatrist who, in fact, has worked in many parts of North America and had over 30 years of experience in meeting the needs of individuals with developmental disabilities. I slept well that night.
When I fell asleep that night, I had several other dreams of inspiration. I dreamed of hearing the story of a family's 1,500-mile journey that allowed a mother to introduce her son—who had a rare chromosomal abnormality, a severe degree of developmental disability, and a long-term history of self-injurious behavior, which had more recently significantly improved in response to his mother and father's courage and a dedicated support team—to people in the place of her childhood dreams. As I awoke the next morning, it was beginning to snow. I thought fondly of the individual whom I observe almost every day while I am in my hometown as I drive to work. I recalled that he, an individual with phenylketonuria and a moderate degree of developmental disability, walks for miles each day from his independent living setting to work. He is always smiling—rain, snow, or shine. As I brushed my teeth, I remembered joining a group of caregivers in soul-touching laughter in response to the life spirit of an individual who has no sight and a history of severe personal trauma. Although her history of personal trauma was many-fold, it included listening to the cries of her friends who died in a fire in an institutional setting; subsequently being diagnosed with a psychotic disorder rather than a more accurate diagnosis of a posttraumatic stress disorder and being treated with an emotion-numbing, sedating, traditional antipsychotic for many, many years before her support team and her family associate home provider invited me to attempt to undo a small part of what had been done, and join in her laughter. As I looked out to check the weather from my eighth floor room, I recalled asking an individual with a moderate degree of disability, a seizure disorder, and cerebral palsy if he were having a good day, and I remembered being told, “Every day is a good day.” That was inspirational. As I walked through the lobby, I noted that many people were busy, but some did have time to say “hello” to strangers passing. I remembered not so long ago, being told, “You're my friend, Dr. King,” by an individual who had been friendless for the first 30 years of her life. I am thankful for my memory.
I have been inspired by people with pervasive developmental disorders, particularly two fellows with Asperger syndrome. The first individual, abandoned by his family, institutionalized, and subsequently threatened with incarceration a number of times (in response to his fraudulent use of long distance phone calls to appease a fetish likely conditioned through sexual abuse) began to trust a colleague of mine over 4 years of therapy. He trusted my colleague sufficiently to have a ticket-scratching party in which he and my colleague scratched hundreds of lottery tickets, which this individual had accumulated over 8 years, as this individual agreed to share the risk (through his own idiosyncratic interpretation) of losing millions. I smiled as I was told that he smiled and said he would return again in several weeks, despite only winning $55.00. I was inspired by the courage and honesty of the second individual with Asperger syndrome who dared to ask me, with a tremulous voice, “Is it a sin to be me?” trying to reconcile his struggle to “contribute to the intimacy of the world” (ashamed by his belief that he was not socially capable of doing so) through watching pornography, his attempt at reconciliation aimed at appeasing the guilt felt while trying to factor into this equation, his family's loving, but rigid moral and religious standards.
I asked the audience at this point if anything inspired them. They were hesitant to answer. One young fellow put up his hand and said something that I couldn't hear. I asked him to repeat it. He looked me right in the eye and he said, “You, you inspire me.” I thanked him very much. I wish I would have walked over and shook his hand, but if he ever reads this, please know that that was a wonderful thing to say. I told the rest of the audience that I believed that there were things in their lives that did indeed inspire them. I asked them to consider to embrace these things, to allow them to grow.
I then told them that I'm inspired:
by people who have been repeatedly emotionally, sexually, and physically victimized and still take their time to learn again to trust
by self-advocates who tell me to “listen with half an ear to executive directors of agencies, because they're very long-winded at times”
by several lecturers I had the opportunity to listen to prior to my speech; one who had the courage to raise sensitive issues without laying blame, leaving his audience with a desire to be introspective and to leave the room with a smile, and a second who challenged several decades of his own work in his quest to continue to support the evolving needs of a small group of individuals with severe challenging behavior and developmental disabilities.
I told the audience that at times I am less than inspired. I told them of my failure to visit a client who became a friend, a woman with a history of a severe degree of developmental disability secondary to an anoxic brain injury and two fractured hips, whom I knew was dying, and yet I made the decision to go to my son's football game rather than to her hospital bed. I know I missed the opportunity to hear her tell me one last time (likely with a wicked smile) that “I dreamed about you again, Dr. King” and that “Yes, I would love to have another button.” You see, she loved buttons and for the longest time, I did not have the courage to tell her that it was not me who brought the buttons that I gave her at the end of our sessions. When I finally had the courage to do so, she inspired me with her nonjudgmental words, saying “It's okay Dr. King, it's still a button,” allowing me to preserve my dignity and smile once again. I suggested to the audience that they attempt to always seize the chance to say “goodbye,” especially if they are a part of someone else's dreams. I am less than inspired at the times when we forget who the most important person in the room is. I am less than inspired by ministries of the same government who believe there are differences between them sufficient to keep issues off the table that are critical to the enhancement of quality of life of individuals with developmental disabilities. I am less than inspired when I or somebody else loses sight of another's best attempt to support an individual or a situation of immense challenge. I am inspired in this context by people learning the craft of being primary support providers to people with developmental disabilities, watching them as they learn to be assertive and inquisitively and courageously question what might actually be dogma, and to watch people trying out new ideas to make best sense of the world at that time and their individual lives.
I explained to the audience that I had gone to school for a long time. I told them that I continue to admire and have been inspired by my mentors who taught me to offer dignity and respect to the people I work with and for, who gave me the freedom to make my own mistakes and to grow from these, and who taught me that if you give, you receive. I suggested to the audience that they honor their teachers, as teachers deserve this, but more than that, need it.
I acknowledged to the audience that not too long ago, while walking into a local coffee shop, I was anxious as I anticipated being embarrassed when I saw a man, who I knew to have an acquired brain injury (after being kicked in the head at age 3 by a horse on his family farm). I should have known this individual's name because I had assisted in supporting him for several years after being presented with his huge reputation for aggression. I had watched as this reputation had slowly, but only partially, been undone when his unrecognized seizure disorder was finally treated. I told him that I had forgotten his name, with much trepidation. He raised his cane with which he had previously assaulted many individuals and he pointed. He smiled when he pointed. When I looked closely, I saw his engraved name. He said, “I carry this cane because many people forget my name.” He said, “This cane was created by my father just before he died and I like to carry it to remember him.” I smiled when he said that, I really smiled. I asked the audience to listen carefully to the individuals with whom they work and support. I suggested that if they did, they would teach them well as they have taught me.
I told the audience that sometimes there are thoughts or feelings that I have that deter from my inspiration. I suggested that this was also perhaps true of them. I got tough with the audience. I said, “Get over it.” I asked them to impress themselves and turn these thoughts or feelings around. I reminded them that the inscription on the Terry Fox Memorial in Thunder Bay reads, “To every Canadian, he left us a challenge. A challenge each of us will meet in our own way.”
I put both hands on the podium, which I do not usually do because I often walk and dance when I lecture, and I suggested that the audience rise to the challenge that the people we all support face every day. I asked them to strive to believe that from crisis comes opportunity; from adversity, strength and courage; and from the self-monitoring of our thoughts, feelings, behaviors, new insights, a better ability to relate in a positive way to others and an increased respect for ourselves.
I asked them to look for goodness in a world that sometimes is harsh and critical, but often rich, beautiful, and oh so full of smiles and joy. Although I do not watch Star Trek very much, I do know that Captain Kirk has succinctly said, “Make it so.” I asked the audience to consider the singer, Mary Chapin Carpenter, who in her most recent work sings “don't be late for your life” (2001). In my last attempt to inspire the audience, I said, “Cherish your children, your partners, family, friends, and colleagues. Stay true to yourself. Be happy, and go in peace.”
R. King, MD, Consultant Psychiatrist, Developmental Disabilities Program, Ministry of Health, North Bay Psychiatric Hospital, PO Box 3010, Highway 11 North, North Bay, ON P1B 8L1. ( Robert.email@example.com)