Dear Readers, especially readers in the British sector,
Imagine for a moment you are a mother. You’re lying on the birthing table, and the child comes out. What a surprise, your child has a rare mitochondrial disease. This happened to one British couple. I’m infuriated as I write this, but the British courts have sided with a hospital where the child is staying, and this hospital wants to kill the child because in their eyes, there’s no hope. I have a few British friends with disabilities, may not be rare ones, but if we kill little Charlie Gard, we may end up with profiles like Charlie’s coming up for blind and paralyzed people, people with mild epilepsy, and people with other types of disability. LEt me introduce a few of the friends I know.
Ben Breen is a blind man who loves playing videogames. He’s also very musically talented, and plays piano like nobody’s business. Ben was born blind, but did his parents give him up for adoption or say he needed to die? Absolutely not.
Aaron Danvers-Jukes is a resident of the Isle of White, a blind guy who loves cosplaying stuff and Comic Con and other sorts of nerdy things. He is friends with Breen and loves to do some pretty interesting things. He was also born blind, but did his parents give up? Nope. The parents are proud to have Aaron as their son, and he is still alive and kicking. Should Aaron’s future wife bear a child with a disability, Aaron will have the resources to teach the kid about comic books, good manners, some other sorts of things, and a good dose of nonvisual uses of stuff in the kitchen.
Samantha is a young British woman with blindness and a mild epilepsy. She was born with disabilities, but did her parents do the unthinkable and give up? No. She’s still alive, and still hangs around on FaceTime when she needs to talk to someone. I like Samantha’s humor and wit as she approaches her disabilities. She wants to be a neuropsychological doctor of some sort, and that’s cool. She also sings, and she’s a really good mezzo soprano. Maybe a high soprano, but I haven’t heard enough high notes.
What is the common denominator of these profiles and vignettes about my good friends who are British? Well, they have disabilities, but their parents did not give up. Ben is a cricket baller, Aaron is an actor who does martial arts and comic stuff is his hobby. Samantha loves music, and has friends in and around British territory and the United States. These people have lives, and they were blessed with the fortune of having parents who did not give up and tried to educate doctors and nurses about their children’s blindness. If they went through the U.S. system, they’d be juggernauted with paperwork like crazy, IEP’s and 123s like crazy. I can’t make out what it would have been like if Aaron was in the Americas, forced to bow down to vocational counselors when they say, “Acting isn’t a reasonable goal.” He’s already in a theater troupe in Britain doing acting and stuff, and he sings from what I understand. If Ben was told that videogame design or sports were “an unreasonable goal” in the British Isles, I don’t think his parents would accept that. Ben independently travels and goes to parties in Kent and other places around England, and has a lot of friends in the locale and attends university. Where would he have been without the support of his friends? Aaron also got awards of inspiration for his martial arts and acting stuff.
What am I trying to say here? Charlie Gard could become the next Aaron, Ben, or Samantha. If medication and experimental treatment is administered, Little Charlie could very well grow up to love comic books, videogames, cosplaying, acting, sports, cricket of course, football (what we call soccer, but better I guess.), or even skydive as an adult. Charlie could have a bright future, but this hospital and the government think they have a right to kill a little child. THis is to me a cruel act of murder.
What would the world be without Aaron, Ben, or Samantha? Boring, if you ask me. Aaron has a vibrant personality and laughs at just about anything, and I came to know him on TeamTalk with a few other crazies … well, good crazy weird guys. Ben was the same way, and he actually dispensed his love of Mumford and Sons. Samantha I got to know through Trenton and some other people. I’d like to let all you British people know that it is in the best interest of the child to live, not die. He could benefit from life, not death. Death of a child to me is like a waste and a what-could-we-have-done moment, and we’re headed to a path similar to the world of the Giver, where the “newchild” who does not meet the demands of “nurturers” is “released”, or killed as you find out in the climax of the story. Little Gabriel could have faced that fate, and to think that this government would kill a disabled child over a rare genetic disease. Let me introduce you to an American with mitochondrial disease who is female, disabled, and proud.
Reina Brown I first came to know on FaceBook, and read most of her posts. I paid attention to those posts that evoke a lot of thought, and she writes a lot about disability advocacy and so forth. Reina is, if I should say, blind, Autistic high functioning, and has mitochondrial disease which disabled her from walking and using common things like stairs. She doesn’t let that stop her from working two jobs, going to school, and highlighting disabled people and services for such. Reina is insured in the U.S. healthcare system, and she keeps a log of a lot of stuff about what goes on. If she sees a problem, I expect her to come on FaceBook and write about it. She was born with all the conditions and such, but in the United States, the parents make all the decisions about their child’s future as a disabled person. Reina’s parents chose to let her live, thrive, and grow. This is a family that deserves a good example and they have a lot of passion for one another. Reina is a Bible believing Christian woman who regularly attends church at Kingdom Hall in her town. She is a passionate believer in Christ, and if not for a family that taught her that she deserves life, she could not have been posting on FaceBook all those years later.
Mito she says sucks, but she deals with it how she can. Sometimes her letters about mito are pretty interesting, like “Dear Mito, you suck, me.” That’s basically what she says. She may be tired a lot because of mitochondrial disease, but she doesn’t let it stop her. Those letters? They mean she’s not letting mito win. PEriod.
Therefore, what is the common denominator? All disabled people deserve a chance to live. To Teresa May, you need to let Charlie Gard live, let him spend time with his family. What makes you think that family will harm him? If you thought this way about Ben, Aaron, or Samantha’s families, you would get loads of outrage. Please, Mrs. May, let the baby go home with his family, and live. Let the parents do what they want. I say that if Trenton’s mom gave up on him, and if my doctors gave up on me, and a lot of us with disabilities, there would be a really boring, ableistic world out there full of the same bullshit.