541 Days Road, Kingston, ON K7M3R8, CA
Alan was born in Peterborough in the mid 1970’s. Upon a referral from their family doctor, his parents took him to a genetic clinic at Sick Kid’s Hospital in Toronto. Alan was diagnosed with a label that, because of improvements in genetic testing, was later found to be incorrect. The family moved to Kingston when Alan was 8 months old and Alan’s grandmother took care of him for a short while.
Alan later developed pneumonia and was taken to the hospital. At the hospital, a pediatric neurologist told his parents that Alan was never going to thrive. The doctor also told them that, with Alan at home, they would be unable to give their other son the attention that he needed. The doctor told them that there was a spot for Alan at an institution, and if they did not put him in immediately, they risked losing their spot. If they refused, they would then go to the bottom of a waiting list and may not get another spot for a long time. Feeling pressured, the parents went to check it out. They really didn’t want to put Alan into an institution but they needed a break and were looking for support.
When they arrived at the building they were immediately struck by the odour. The old wooden building absorbed the smells that permeated the air. At meal times the building would often smell like mashed turnips. There were no screens on some of the windows and, as storm windows always had ventilation holes in the bottom, the building developed a problem with flies.
There was little privacy or dignity for the children as they were bathed on what appeared to be a cold mortuary slab. Children were kept in large steel cribs, which Alan’s parents called “steel containment units”. Alan and 3 or 4 other children were in one room for children who were classified as being medically fragile. Mom and Dad tied Alan’s toys onto the crib so they wouldn’t disappear.
All of the children always wore an ID bracelet. They were never taken off and Alan developed eczema under his. To remedy this problem, his parents got him a small silver bracelet to wear instead.
When Alan’s parents took him some new clothes they were shown the laundry room. They were surprised to see that there were hardly any clothes left in it. Much of Alan’s clothes had disappeared. The children were given striped flannel pajamas that were taped with masking tape on the wrists and ankles to keep them from coming off. They wore cloth diapers that were also taped on. The pajamas were taped at the waist as well to prevent kids from reaching into their diapers.
Alan spent most of his time laying on his back in his crib. So much so that when he was held upright his hair stood straight up. Alan’s parents would cut his hair at home.
During visits to the institution they could take Alan to the TV room but the television was always on vertical hold, and it was very high up on the wall.
Alan did not progress at the institution. There was little time for interaction by the busy staff. Alan’s parents would take him home every Sunday. They would lay Alan on the floor and place keys on the carpet out of his reach. Alan would propel himself across the floor to reach them. The parents showed this to the staff who were very surprised as they didn’t know Alan could move on his own. Alan’s father believes Alan was never given the opportunity to try.
The only stimulation Alan received was at a segregated nursery school. He had a specialized bolster seat with sides and a wedge between his legs. In this chair, Alan could sit upright. When Alan was 5 or 6 years old, much to his parent’s delight, he demonstrated what he had learned at the school and held his hands in the air for a hug.
Alan had few choices at the institution . There were many children living in each wing. With limited staffing there was no time for interaction beyond custodial care. Most of the staff were also very institutional in their thinking. Alan’s parents rarely met any other parents. There was a visitors’ room at the end of the wing and they had to walk through the ward to get there.
When it came to the institution, many people asked Alan’s parents what they had to complain about. At least they had a spot where their child was safe. But they always believed deep in their hearts that they didn’t want Alan living there. They always believed that Alan deserved better.
Looking for alternatives, the parents went on a tour in Hamilton and saw a child like Alan living in a group home. They were told how much better it could be for Alan. Community Living Kingston opened a home on Mowat Ave. and Alan became the agency’s first medically fragile person who moved into a home from an institution. After 4 years of institutional living, Alan left the institution with one little bag of clothes. On their way out the door, the doctor at the institution tried to discourage them by saying, “Good luck with your experiment.”
At the institution, Alan was swaddled and laid down on a table to eat his meals. He didn’t like anything in his mouth and was fed very quickly. At one point, they showed his parents a long nippled bottle and soother for children with a high palate and they had wondered why they hadn’t been shown this before. In his new home, Alan sat in a highchair to eat his meals. He would hold his own spoon and would be guided hand over hand to eat. Staff spent time with Alan to develop his own eating skills.
Alan’s mom became the head of a parent’s group. They would take Alan to medical clinics at the institution on Tuesdays. Here they started a biofeedback program to help Alan hold his head straight. A train on a table would move whenever Alan held his head straight. This method was very unique at the time, and worked very well for Alan. While there, Mom was made aware that their old doctor would also go to the medical clinics and take students to practice rectal exams on the residents. The students would protest, saying that it was not right, and they shouldn’t be doing that.
Alan went to (*) for his dentist appointments. One day he fell out of his wheelchair and needed an emergency root canal. Without any explanation, Alan received the root canal without any anaesthetic. Because of this, Alan still hates going to the dentist and now has his cleanings done at the hospital with sedation.
When Alan was 7 years old he was diagnosed with a hearing problem. There was no way at that time to assess Alan’s hearing so Dad had to go in the assessment room with him to interpret his cues when he could or couldn’t hear the test noises.
Alan had his hip flexors cut to help his legs straighten. In Kingston, he would have to be immobilized for 6 weeks. Mom and Dad said no and took Alan to Sick Kid’s in Toronto. He had the operation there without any bracing required.
When Alan started Kindergarten, his parents insisted that he go to a regular school. They had many evening meetings in the basement of their home negotiating with the school board to allow Alan into class. Once there, Alan was placed in a standing frame, which allowed him to fully participate with his peers. He was the first student at the school to have a teacher modify the curriculum to meet his needs. He joined in with the other students in everything they did. He was even in a play at his high school. Alan opened the way for other kids with disabilities to go to public schools. Alan opened the hearts and minds of students and teachers alike.
Because of a strike at Community Living, Alan moved back to his parents’ home. He lived there between the ages of 10 and 18. Community Living continued to help the family out with respite care. When Alan turned 18 he moved into his own apartment and lived there for 10 years. To assist with his daily living, Alan hired a woman to live with him.
Alan then moved to his current house, where he is supported by Community Living Kingston and District. Alan lives with 3 other people. He has lost a bit of control over his life from this move.
When asked about past societal attitudes, Alan’s parents mention there was a prevalent sense of pity. People were not sure how to refer to Alan.
When it came to medical attitudes and care, they felt as though they had no access to Alan’s health information while he was in the institution. They felt as though they could not address any problems and felt ignored. When Alan was at the institution he was taken to the hospital to treat an ingrown toenail. Mom took time off work to meet him there for the procedure. When she arrived at the hospital, she was told that the procedure had been done an hour ago. No one informed her of the change in time. At the institution, Alan had chicken pox and his parents were not told about it until it was over. They felt they had to battle the medical establishment who would make decisions without parental input.
Once, when they took Alan to Toronto for assistance with his walking gait, doctors came and took him away with a resident. They were not told where he was going and, after a while, they went to look for him. They found him in a room with a “do not disturb” sign on the door.
Despite never being encouraged to visit Alan, or being provided with a proper visiting room at the institution, Alan’s parents were never worried about abuse. They did worry a bit about neglect. They were also dissatisfied with the institutional methodologies and procedures, especially the cold slabs for bathing.
When asked about how they felt about institutions, Alan’s parents made the following comments:
“If anyone thinks to do this again, they should be asked how they would like to live in one.”
“We have to build empathy for others and how can we do this if people are kept behind closed doors. In institutions people lose their identity and personality. People are warehoused and all treated the same. Institutions provide basic custodial care with the basic necessities of food, clothing, water, and shelter.”
“There is a dignity or quality about every human being that you can only appreciate when you get to know that individual, and we can only do that by interacting with them. You can’t do that when you lock someone away.”
Living in the community has made Alan a more balanced individual with many different experiences. His quality of life, his self-worth, and the pleasures of living have all been greatly enhanced by living in the community. Alan’s parents, and Community Living Kingston and District, have always believed in helping Alan to create a full life. Alan enjoys living a life where he can work and play, where he feels a sense of belonging, with opportunities to make choices, to network, to forge relationships and to find happiness while directing the course of his own life."
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