I was forced to become Thomas’ guardian due to issues with my mother's estate. It was suggested that maybe Thomas should be taken away so that he would be better looked after. Someone else had an eye on Thomas’s funding. They were looking at turning the house into a group home. I knew that Thomas was happy where he was. I was scared. I didn't want to have guardianship over him. Rationally, I knew that these people didn't have any legal right to take Thomas, but I didn't know the law. I didn't have the money for a lawyer either.    

Unfortunately, part of the process of assuming guardianship over Thomas was to have him declared ‘legally incompetent’. I was told it could possibly get reversed in the future, but it's a horrible thing. Really it puts people in this position forever. This decision should have the ability to be amended, changed or modified in the future. Now Thomas is considered legally incompetent, and I did that to him – right after the loss of our mother.   

As the oldest sister, I was always tagged as being in charge. My mother had plans for me that I didn't share. I had different dreams. But she knew that she could always count on me. She knew that I would take care of Thomas. When she was dying, I told her that I would look after him for the rest of my life. But she’d already created an estate that left my hands tied.    

I sometimes feel as though I'm making all of Thomas’ decisions. However, I understand the importance for him to be driving the things that he likes to do. Thomas is up for trying new things, but I wonder about the things that he's been doing forever and if he's been hating them forever.   

Thomas likes to go swimming and he used to attend this adapted swimming class for people with special needs. I didn't know if it was the best for him because he didn't seem happy. That's when we tried Family Swim classes, but there were too many kids, and it was busy. Then, although I was apprehensive about it, we decided to try Adult Swim classes. I had expected people to be mean. I was worried about how others would perceive him more than his interest in the class. But he had a great time. The success at this class made me realize that he didn't have to attend the modified one. We then took an Aquafit class which I expected to be hard for him, but he was ok. He had a great teacher. The Aquafit class supported a diverse group of students and other members warmed up to Thomas. This made me question, why I should segregate Thomas from spaces with people who don't have disabilities. He doesn't care and he's perfectly fine among regular people.   

Thomas can communicate, however, there are times when he may say ‘yes’ to anything or ‘no’ to anything. It depends on how he's feeling. Interpretation is needed because sometimes he doesn't really mean what he says. Sometimes I feel as though I'm taking away his right to express himself, but I just want to help him be understood by others. I often say he's nonverbal, but he really just communicates in a different way.    

My brother goes through the world in the body of a large black man. Being misunderstood by others could get him killed. Thomas also doesn't look typically intellectually disabled. He is engaging and carries himself well. I find many people are surprised to realize that he has an intellectual disability.    

I try to let him choose what to wear, but if it’s a special occasion we negotiate. It's important to me he is well dressed. Sometimes he gets out shorts in winter, but I know he likes to mess with me, and I see him laughing.    

My mother decided everything for him. The system is set up for parents. But this is why siblings often say, ‘We don’t want to take care of our siblings in the same way our parents did’. We can’t. In the system, there is basic acknowledgment of parental figures but it's not the same thing for siblings. We need help and assistance, not just coming in if something is wrong. We live in fear of government agencies saying you shouldn’t be doing that and everything going south.   

Thomas needs something in between; not either/or, or a decision made that says he's completely competent or completely incompetent. He needs support yes, but something where he has agency of choice and day-to-day decision-making. He may not be able to verbally answer but he can tell you lots. You just need to get to know him.   

Thomas is a citizen of Canada and a resident of Ontario. He's entitled to his rights. If Thomas was a drug addict, they couldn't take his rights away. But for people who are born with disabilities or end up with one like Thomas and his brain injury, the system takes his rights away. I fear that in future something like this might happen to me.    

It should be about protection not control. This is not a nice world. People like Thomas can be taken advantage of. When there is the changing of the guard at the gate, people like Thomas are just caught in the middle. And there’s still the question, ‘What happens to Thomas when I’m not around anymore?