My 69-year-old brother, Ivan, died of heart failure in his sleep a few weeks ago. Hospitalized for pain, he underwent tests: kidney failure was imminent. He had been blind from birth, but as he wound down, he told his caretakers that he could finally see – and that everything was beautiful. Left alone for a while, he began to have conversations with… whom? When asked, he said “the angels.” Staffers listened outside his room: he really was having conversations – with pauses for angelic reply that were thoroughly mysterious.
Ivan was also severely mentally-challenged. His afflictions broke my parents’ hearts, and his institutionalization cast despair over my family’s life. In the years before her untimely death, my mother visited him every week, haunted by her inability to care for him, and by the life to which he was condemned.
My earliest memories of Ivan are ones of frustration with a brother who couldn’t play like other kids. He cried too easily. Finally, at age seven, he was sent to (as it was originally known in 1876) The Orillia Asylum for Idiots. For families and communities who couldn’t care for their “idiots,” Orillia was an enlightened solution: these broken and embarrassing children were now fed and housed, while thankfully hidden from view.
But in 1960, Pierre Berton denounced the renamed Orillia Hospital for Retarded Children as a nightmarish firetrap, and he compared Ontarians’ attitude towards “the retarded” to Nazi Germany’s. Subsequently, millions of taxpayer dollars were spent to conceal the mentally-challenged in more humane style: by 1974, ten thousand such people were hidden in modern brick and concrete institutions across Ontario.
I worked one summer in Ivan’s new home at Southwest Regional Center near Cedar Springs – a vast compound on farmland overlooking Lake Erie. It was populated by nearly a thousand clients – at the high-functioning end: misfits and juvenile delinquents, and at the low functioning end: knots of human flesh lying forgotten on basement floors with no means to express their rage beyond hurling feces across the room.
I saw Ivan every day. Life there was better. Rather than a bedlam-like ward, he now shared a room with three others, and had his own locker. New training and education programs, with swimming pool, gymnasium, and classrooms, reflected the humanistic trends of the 1960s.
But Cedar Springs’ residents were still locked away from public view. Despite the good intentions that swept Ivan and his kind under this metaphorical rug, I can’t have been the only one for whom its rural isolation and industrial smoke stacks echoed Pierre Berton’s fears regarding society’s darker solutions.
Then, around 1990, the Liberal government took aim at the institutional and ideological failure of places like Cedar Springs, and proffered the alternative of group homes. Class action suits regarding widespread institutional abuse were launched, and the media trumpeted theories about liberating the mentally-challenged to live in urban and rural communities.
In angry letters to the Ontario Ministry of Community and Social Services, I cynically charged that the campaign to push people like Ivan out the door into group homes reflected sinister motives and social entropy. Grotesque as Cedar Springs was, it was too big to fail: large, warm, safe – what more could be done for Ivan? The imagined horrors of group homes – inadequately monitored by a distant bureaucracy, staffed by unemployable misfits who would neglect, exploit, torment and abandon Ivan – compounded the fear and heartache that I felt about my poor brother.
But Cedar Springs was to be closed, regardless. We were told that the “best” group homes were flagships for the policy change, and that if we waited, Ivan would wind up in lesser facilities as funding ran out. So, away he went to a suburban house in Fergus, Ontario, ninety minutes from Toronto. Unexpectedly, it was the beginning of a new life for Ivan.
In contrast to the often sullen, uncommunicative people who populate his IQ level, Ivan was a lot like my gregarious father: He loved music, singing, food, beer – and women. In Fergus, he was taught life skills by mostly-female college-trained caretakers: he folded towels and learned macrame; he wore colorful ties and was clean-shaven; he was employed for one hour a week (with pay!) in the town chocolate store. He learned the voices of dozens of townsfolk. But community life offered heartbreak too. Ivan’s relationship with a Down syndrome woman – a constant and devoted companion – ended when she died suddenly, and he cried in his room for days.
Although he displayed echolalia – an autism-like repetitive speech pattern – he sometimes uttered stunningly conscious statements, as though an intelligent adult was dreaming inside him, only occasionally able to waken. You couldn’t be more blind than Ivan – but towards the end of his life, he would tell you what color shirt you were wearing. No one could figure out how he did it.
I wish my mother and father had lived to see Ivan’s later life. His IQ was around 35, but unlike his more intelligent brother, he was completely happy. I’ve never believed in angels, but Ivan spent his last twenty-five years surrounded by kindly young women who doted on him. At his memorial, they wore his ties and in honor of him, sang his favorite song: “Jesus Loves Me.” When people rose to reminisce fondly about him, I was barely able to speak. Sixty years of anxiety and sadness had led to this: For the first time in my life, I was proud to be Ivan’s brother.