Free Looks Like Daylight by Deborah Ellis

able to drink from the river. Imagine that! When they got thirsty they could just go down to the river, scoop up some water and drink it.
    I would like to be able to do that again.

Our village was healthy and there was no place in the country possessing such advantage, nor no hunting grounds better than those we had in possession. If another prophet had come to our village in those days and told us what has since taken place, none of our people would have believed him.
    â€” Ma-ka-tai-me-she-kia-kiak, or Black Hawk, Chief of the Sauk and Fox Tribe

Jeremy, 16

    First Nations children with disabilities can face extra challenges, from the remoteness of their communities, the lack of resources available to them, and racism that too often goes hand in hand with the providing of health and social services.
    Contrary to the commonly accepted belief that there are way more First Nations children with Fetal Alcohol Spectrum Disorder (brain damage occurring in an unborn baby when a pregnant woman drinks alcohol) than in other communities, some studies say the numbers are the same. What’s different is that if a First Nations child has challenges, she is more likely to be labeled with FASD automatically, with other causes such as autism or environmental pollution not even considered or tested for. The wrong diagnosis means the child does not get the proper treatment.
    Jeremy is Mi’kmaq and a member of Pictou Landing First Nation in Nova Scotia. His ancestors have been in this territory for more than 9,000 years. There are thirty-five reserves today in Nova Scotia, with a population of about 25,000 people.
    I spoke with Jeremy’s mother about her son.
    Before giving birth to Jeremy, his mother, Maurina, spent five years in Sarnia, in Chemical Valley. She thinks Jeremy may have been affected by all the chemical factories in the area. He was born hydrocephalic, which means there was liquid on his brain. He has since also been diagnosed with cerebral palsy and autism.
    When they presented Jeremy to his mother, they told her he probably wasn’t going to live long. His mom looked down at him and said, “It’s you and me against the world, baby. You and I are gonna work real hard.”
    She gave him the best care she could, with special massages and exercises for his eyes. She took him with her everywhere so he wouldn’t feel like a stranger in the world. Between hospital stays, he would go to school, where the kids liked him and treated him well.
    His first school was mixed, for white and Native kids. Jeremy enjoyed being there. But he would sometimes bang his head — maybe because he was frustrated or because the shunt in his head caused him pain. To try to get him to stop, the staff put him in a small room and turned out the lights. A staff member said Jeremy had been in the room like that for just a few minutes. Kids at the school told Jeremy’s mother it had been more like an hour.
    The Pictou Landing First Nation told Jeremy’s mother she could bring him there. And she did.
    For many years workers came to her home to help her with Jeremy. Jeremy needs a lot of care, as there are many things he can’t do on his own. He gets high fevers and at times he starts gagging and can’t get himself to stop. He gets pneumonia easily and often.
    A little while ago his mother had a stroke. It has become very hard for her to look after Jeremy. And the money that Pictou Landing First Nation has to hire helpers is running out. His mother doesn’t know what to do.
    The federal government told her that if she took him off the reserve and put him in an institution, they would pay for his care. But there was no separate funding for children with disabilities who live on reserves.
    His mother doesn’t want to put him in an institution. On the reserve he has friends, people talk to him. One friend comes over and tells him, “Get your shoes, it’s time for a cruise!” And Jeremy laughs and