August 27, 1986 -
July 20, 1997
Age 10 years
Meica Bristol Fund
("Saskatchewan Assoc. for Community Living"
to advance human rights issues for persons with disabilities)
Meica was "unique". She was born with a disability that was all her own. She didn't fit into any of the "categories" children are generally slotted into. She had something that looked like Cerebral Palsy, but there was more. She had sensory problems that were common to children who have Autism. Because of her uniqueness, we were always breaking new ground.
Meica was born in Northern Saskatchewan where access to therapy services was minimal. For that reason, we experimented and found what worked for Meica. We had a breakthrough when she was 2 and a half. We could finally communicate! Like Meica, her method of communication was unique, but it worked for her and we were thrilled. Despite an uncooperative body, we finally knew she was in there!
At the urging of medical personal who had seen Meica, we moved to be closer to medical services. The first physician we met coldly told us that Meica could not have services. He said it wouldn't make any difference anyway. "At least try" I begged. She had never had the benefit of therapy, who knew if it would work or not without trying? I lobbied hard all summer and he finally did grant her a 'try'. She worked hard, never complaining about doing her therapy, but always with enthusiasm. Waiting for her to fail, reluctantly, coldly, every 4 months, he would extend her 'try' as she made more progress. We were so proud of her!
That was the beginning of Meica's battles. The next was acceptance of Meica's unique communication. "Unconventional!" they said. We agreed, but they couldn't come up a conventional method that worked for her. That was a 3 year battle. Finally, they acknowledged that her system worked for her and that they would use it. From that fight came an apology from a brave speech therapist who said she had learned much from Meica, that the department was doing things differently as now they were listening to parents, and she would never do it again. Meica had paved the way for children who followed.
Our 3 year fight with this facility also led, in part, to another change in philosophy. The facility changed from one of being 'child centered' to one of being 'family centered'. This meant that now they listened to what the family's wishes were for the child rather than dictating treatment and overriding the parents. One therapist told me that in discussions regarding the changeover, that our name kept coming up. One more for Meica!
Meica left this facility to enter school. I look back on that year as a great one - one in which Meica was very happy. She was placed in a mainstream classroom with a teaching assist. She finally had friends!! The children would fight over who would be with her, and finally asked the teacher to set up a schedule so that everyone would get their chance. The teacher and teaching assist used her communication system, and Meica did her school work. It was a year in which we did not have to fight for her. I could finally relax .... until the end of the year. A change in the administration meant a change in philosophy. Meica's communication system 'did not work', they suddenly told us, and Meica would have to go to a 'contained' (segregated) classroom. Gone would be her friends replaced with children who also could not talk or walk up to her to play. We could not let that happen. Meica was so happy there.
We tried to follow channels, but it soon became obvious to us that Meica's placement was not up for discussion. We filed a human rights complaint. That was over 4 years ago, and it is still not completely resolved as of the summer of '98. Whatever happens, win or lose, Meica will have furthered the cause of children with disabilities to be offered appropriate programs in educational settings - hopefully with friends. Unfortunately, she did not live long enough to see the benefits.
Meica also had care givers to help with her care at home after my physical body had given out from the years of helping her. Those were 6 month contracts. Twice, those contracts were withdrawn with less than 24 hours notice. Without the contracts, I could not have cared for Meica and we would have lost her. We must have the contracts! We registered a complaint with the Ombudsman's office. Again, not before her death, but after, the way contracts are signed has been changed to ensure that this does not happen again. Again, other children and families will benefit from Meica's path.
Meica made friends everywhere. She was known to people we did not know. After her death, someone wrote to me that it was a combination of her innocence and vulnerability that drew people to her. Others said that it was her inviting smile. The seniors at the mall where we would practice with her walker all knew her and would stop to talk and encourage her. Sometimes they bought treats. I thought it was like Meica having a whole bunch of grandpas and grandmas. I think they gained much from having someone young in their midst. For Meica, her advantage was that they had gained wisdom in their years - on one hand they were grandparents and could be grateful for their own healthy grandchildren and on the other, many understood disability as they had their own aches and pains.
There were others at the mall. One merchant would give her a cookie as a reward when she reached the storefront with her walker. A man and woman at the mall bought one of the huge dolls that Meica stopped to admire every day as we passed the specialty store where they were sold. They gave it to her without fanfare, then disappeared. There was "Miles - the fry guy". Meica loved his fries, and he would heap her plate with them and offer a complementary drink. There were many more acts of love and kindness to Meica. She had touched them all in some way.
Meica loved to do her therapy. Her therapist described her as a "kool" kid. Her uniqueness was a challenge to them professionally, and they learned much from her. Meica's special care givers, university aged young women, were like big sisters. Many of them re-evaluated their career goals and moved into areas dealing with disabilities.
Her friends at school were her great joy, though. In the school year before her death, the school district notified me that Meica would be forced to go to a 'segregated' school against our wishes. I was so exhausted from the years of trying to fight the system that I found myself emotionally exhausted, unable to fight anymore. We removed Meica from school. The program they had planned was not addressing her needs and she wouldn't be with her friends in a new classroom anyway. We would home-school her. She had aquired a new computer that was her voice. She was so proud and every day she asked to see her friends. She wanted to show them her new voice. We brought her back one day. The children swarmed her and were so excited to see her - they talked all at once. Meica positively beamed and wanted to return to school and see her friends! She didn't understand the politics. We asked to take her back at the end of the school year but the school refused to allow her to come. She died a month later without seeing her friends one more time ...... or they, her. What a small thing we had asked for. I wonder if the person responsible for refusing to have her come even thinks about what they did to her or the other children.
Meica left a classroom of children who saw her as a person. She was not a stranger to be ridiculed in a mall, but they knew her as a friend. They loved her. Parents told me that because of Meica being in the class, their children were less selfish, more caring, gentler. I know that one day when these children are in the work force, they will see persons with disabilities as employable - seeing the human person within and knowing they are capable by focusing on their strengths, not their weaknesses.
There-in lies Meica's legacy. Meica's legacy was one that took great personal sacrifice on her part to create. That happens some times. Human rights are won by hard-fought battles. Meica's disability was not the cause of her oppression, it was how those around her choose to see that disability. How tragic that we force people to live such difficult lives till we "get it". The world wanted her to fit the container that we have created, but she couldn't make her body fit. People had to reach out to her to accommodate her specialness. Some people could - others through selfishness and greed just couldn't.
Meica created change because she was here - we saw the changes. She made this world better for children after her. Some changes we still hope for.