Chesapeake Down Syndrome Parent Group Baltimore, MD

View Original

A life worth living.

Over the summer, 19 people with special needs were brutally murdered and 26 injured in a facility outside of Tokyo. Some of the people killed were 70 and some 18, just two years older than Robb. The murderer had worked at the facility, and after he killed them he turned himself in saying, 'It would be better if disabled people were dead.' When I first saw this I did not know what to think, let alone what to write. It is so full of hatred, that all I can think is the person who said it should be behind bars. Because of my brother, and all of the people I know with special needs, this hateful phrase takes on a new meaning for me. Look at this phrase again, but replace 'disabled people' with children, siblings, friends, athletes, artists, teachers, students, humans, brothers. It brings me to tears thinking that someone might wish either of my brothers dead or any of my friends and family dead, with special needs or without. This man doesn't look at people with special needs as equals, instead he acts as if they are less than that, as if--because they may see the world differently, have more challenges or special needs--they have no value and they can't live a life worth living.

 A life worth living.                

This is a phrase that I have always been afraid to write about because many people would agree with this man, they would agree that people with special needs would not have a life worth living. If that is the case, though, what is a life worth living? Going to college, getting married, getting a job, maybe having some kids, retiring, and the inevitable death at the end of it all? If that is a life worth living than I know of many people with special needs who have checked the boxes, completed the list, done what is supposed to be done. I understand that when people say persons with special needs do not have a life worth living, they do not mean all people with special needs, but they specifically refer to the people who might be in community living, have needs that make them forever dependent on others, people like my brother. For some reason people think that going into community living makes life not worthwhile, but why? If that is the case, why do we have places like boarding school, colleges, even retirement communities where community living is praised, even sought after. After all, people with special needs living in communities together are not just staring at walls the whole day; many get jobs in their larger communities. Possibly their jobs in service or recreation may seem small, but they often have a big impact on the community. Why do we value the jobs of those with special needs less than those of someone who, for example, manages wealthy people's money or someone who created toy that became popular by luck, when these jobs don't even contribute to society as much? Because these people get paid more? 

But something tells me that no one is actually talking about jobs when one says people with special needs do not have a life worth living. They seem to think the things they do are meaningless when many times they are the same things we all do. They will spend time with friends in their community, or friends and family that come and visit. They do things they enjoy like everyone does, like Special Olympics where people go to do anything from swimming like Robb to singing. But I am sure many people still do not think it is a life worth living even though it is a full one. Many of you are probably stuck on that one thing people like my brother might not have too much of, independence. For you, all I have to say is that no one is completely independent. If you have to go through life all on your own...then you clearly have not looked around. There will always be people there for you, and though some need more people there for them than others, none of us are alone. Also, independence is relative. My brother is independent when he uses the bathroom on his own, changes by himself, and every day he becomes more and more independent. Also, even people who cannot move without help have independent thoughts and ideas. No one can take internal independence away from another. 

There is one thing that is needed to live a worthwhile life, though, something that cannot be disputed. It may sound silly, but I would like to quote John Lennon, "The key to life is happiness." If you can find happiness, your life is worth living. It will never be found everywhere, and you may not be happy about your amount of independence, your job, your living situation, but if you can have that moment where you can't help but smile I believe you have achieved a life worth living. If any of you could look at my brother when he is doing one of his low belly laughs, tell me that he should be dead because his life isn't worth living, I'm afraid you haven't heard: Life was never meant to be easy, but as soon as you are happy it is worth it, every second.

About the Author: My name is Astri Doub, I am 15 years old, and my 16 year old brother, Robb, has autism and Down Syndrome. I enjoy spending my time coaching Robb at the Special Olympics, and hanging out with both Robb and my younger brother Poe, as well as my two dogs, Sadie and Sophia. I also have fun writing my blog about Robb, robbslife13.blogspot.com