During breakfast this morning Sebastian and I were listening to CBC radio. I started to cry. Sebastian looked at me, curious about my tears. I stopped and put on a happy face after telling him that I had heard something sad on the news. A Canadian man was released today on parole after serving ten years of a life sentence for killing his twelve year old daughter by asphyxiation because she had severe cerebral palsy. The jury had deemed the killing a mercy killing and the man felt no remorse for causing the end of his daughter’s suffering through death. I stared at my perfect son, who has a form of moderate cerebral palsy, although with the current seizure medications it sometimes seems more severe. He smiled at me and tapped on his iPad to ask for a drink.
A bit later in the morning I had time to look the story up online and read some of the comments following the story. It took three pages of comments before I found someone who was as saddened and appalled as I was. The majority of the comments where taking the side of the father, citing euthanasia rights. The euthanasia rights of the father? The person for whom the disability does not directly affect? As I was reading the comments I felt both sad and angry. A large part of society are still uneducated about disabilities. Many believe that if you have a disability you must be suffering and wishing for an end to your life. I recall reading an article when Sebastian was first diagnosed with CP about the quality of life for children with disabilities. The study was done in the UK and found that the quality of life for kids with disabilities was sometimes better and that these kids were just as happy.
It was clear to me that not only did the commenters posting not have children with a disability, but they likely did not know anyone with a disability either. As I mentioned, the first person to contest their comments grew up with a brother with severe CP himself. Society still sees individuals with disabilities as people to pity or hide away. One mentioned an institution as an alternative and also begrudged the system for not doing more to help the family. Another mentioned the limited means the family had to take care of the daughter. Curious. Who’s suffering was really ended?
Having a child with a disability is hard. But its also awesome being the mother of my son. Read ‘My Baby Rides the Short Bus’ for some more examples. Being a child with a disability? I’m sure that’s difficult too. For reasons we can’t really understand because we are not that child. Sebastian doesn’t understand what he can and cannot do, although he is beginning to. When he grabs onto a toy the happiness and accomplishment in his face is undeniable. He knows that he has done something he has set out to do and he feels good about doing it. I see this smile during other activities and sometimes during therapy too. He likes to stand up and takes steps. But he is still young and does not get frustrated when his legs buckle beneath him because he does not have the strength to keep going (thank you seizure mediation number two). As parents, we see defeat in a different way than our children do, at least in my experience with Sebastian so far. I imagine it will change as he grows and has a greater understanding of his limitations and accomplishments.
I started thinking about the amazing people that I know or have read about who have cerebral palsy who have made a mark in this world. A 5 year old boy who walked around a track with his walker, raising over $12,000 for a school in Cambodia. Cooper. A 6 year old boy walking the last few feet of a marathon to raise money for cerebral palsy, without the aid of his walker. S. A man who uses his left foot to create masterpieces of art. Christy Brown. A man who first started typing with a pencil attached to his forehead who later became a well know author. Christopher Nolan. A man who takes part in marathons, and Iron Man competitions with his father. Team Hoyt. A man who climbed a mountain, pulling himself up with his arms in a special pulley device. There are more. Some of these individuals are moderately affected and some are severely affected. They accomplished amazing things. Every little thing Sebastian does is an accomplishment. Even if they come slowly or over time, they still come.
One large misconception about cerebral palsy is that those affected will also have mental impairments. This is actually not the case for most with CP. There can be global and developmental delays, but there is also cognitive awareness and understanding. It frustrates me when we meet a new doctor and they are surprised that Sebastian is so aware of his surroundings, and so social. They expect, BEFORE meeting him, that because he has cerebral palsy he will not be able to smile at them or be interested about the new place he is in. Why does anyone have to assume the worst? What happened to having an open mind? Trying to learn and understand about the world and everyone in it?
For me, reading that news article and those comments made me sad that someone could and would do that to their child. Their child that has the same disability as my son. But it also made me angry. Angry that society is still so ignorant about people with disabilities. And I’m going to do something about it. One person at a time.
Links for the amazing individuals mentioned above will be added to post.