Hear My Battle Cry
/"You're such a retard."
"That's so retarded."
I've heard both of these sentences spoken within my earshot within this last week.
A family member spoke one of them.
Clearly the years of my campaigning on the internet to end the use of the R word have not translated well in my real world experience. It's easy to stand up on the internet and write essays on why you shouldn't use the R word, to place the internet on notice. But I'm finding it much more difficult to stand up against the endless waves of ignorance when I can see the whites of peoples eyes when they drop the R bomb in my lap.
It infuriates me that I have to keep educating on how dismissive and demeaning this word is, not just to my son, and to me but to everyone who loves a person who may be labeled with the dreaded R word.
It breaks my heart when my niece comes up to me and excitedly announces she has a joke she wants to tell me and the punch line is about being a retard.
My extended family drops the R word. My siblings have used the R word. They love the Jumbster. I can see it in their faces when they hold him, it reflects with every careful cuddle they share with him, every loving kiss they drop on his forehead.
But the reality of raising Jumby and raising Jumbster's siblings doesn't impact them immediately, unless I thrust him in their laps and try and cajole them into changing his diaper. Their reality is far different than mine. Jumby is just another family member, one they accept as their own but one they don't really understand.
It doesn't occur to my family members that every day I shoulder the weight of what it really means to parent a child with such extreme disabilities. They understand he has to be tube fed, and chauffeured around in a wheelchair and diapered. They know he can't speak, or walk or dress himself.
But the nuances of his life and what it means to live with a plethora of disabilities doesn't affect them. They don't have to worry about the endless medical appointments, they don't struggle daily to keep him limber, and they don't worry about breaking his bones every time he needs to be dressed. They don't feel the weight of a thousand boulders resting on their chests thinking about his medical stability and worrying that this moment may be his last.
Nor should they have to. Boo and I adopted Jumby, no one else. They shouldn't worry about whether Jumby has a thousand tomorrows or just one. They don't have to lose sleep about the quality of Jumby's daily life, or worry about what his future holds. That's what Boo and I signed up for. It's our problem to solve about Jumby's long-term life goals. To agonize over whether he should be institutionalized or not in the future. The only real responsibility Jumby's extended family has is to ensure his safety in their presence, to love him and to make him know he is loved.
So when they drop the R word, they don't know they just shot a hundred arrows of hurt into my heart.
The R word continues to slip out. And I continue to stand up, both in real life and in the online world to say that is not okay. That is my son you are talking about. That little retard you just made a joke about, that could be my child.
It still affects Fric and Frac. It breaks their heart and chaps their arses when it is a school friend who pollutes their ears with this word.
We are all standing on the shores of ignorance and discrimination, fighting for the world to see the boy we love and to cease the unending use of such a hurtful world.
It's tiring. It breaks my heart. And I stand before you to shamefully admit that more than once I've heard that word used by someone I know, or like or even love, in real life and in the cyber world and have done nothing. Said nothing. I remained silent; because it was easier, because I'm tired of pointing out that every time you unthinkingly use that word you are minimizing the struggles of disabled people and their families. You are demeaning, mocking and disrespecting a society of people who have been forced to endure more hardship and struggles than most, simply by nature of their birth.
It's exhausting. And being the primary, often single caretaker of two teens and a fragile, overgrown, forever infant already exhausts me..
But that doesn't mean this isn't a battle that isn't worth fighting, just because I'm often too overwhelmed to pick up the armor, to busy plucking out the arrows of your hurt from my heart. My children deserve to live in a world free from this contagious ignorance.
So today, I'm once more standing up before you, asking everyone to think before they speak. And I'm thanking people like Ellen Seidman who has stood beside me, for her own family, her own child and wrote a powerful post on what happens if you ask people to stop using the R word.
It's not easy standing up for what you believe in when the cacophony of the world threatens to drown out your voice. When the internet says you have no dog in this fight simply because of the title of your blog. When strangers blatantly mock you and your family and when the world wants to simply stick their fingers in their ears and pretend they can't hear you.
I may not change your mind; you may still use the R word. But I will continue picking up my shield to fight this battle. Even when it seems exhausting and futile to do so.
Jumby deserves it. And so do you, even if you don't know it.
"That's so retarded."
I've heard both of these sentences spoken within my earshot within this last week.
A family member spoke one of them.
Clearly the years of my campaigning on the internet to end the use of the R word have not translated well in my real world experience. It's easy to stand up on the internet and write essays on why you shouldn't use the R word, to place the internet on notice. But I'm finding it much more difficult to stand up against the endless waves of ignorance when I can see the whites of peoples eyes when they drop the R bomb in my lap.
It infuriates me that I have to keep educating on how dismissive and demeaning this word is, not just to my son, and to me but to everyone who loves a person who may be labeled with the dreaded R word.
It breaks my heart when my niece comes up to me and excitedly announces she has a joke she wants to tell me and the punch line is about being a retard.
My extended family drops the R word. My siblings have used the R word. They love the Jumbster. I can see it in their faces when they hold him, it reflects with every careful cuddle they share with him, every loving kiss they drop on his forehead.
But the reality of raising Jumby and raising Jumbster's siblings doesn't impact them immediately, unless I thrust him in their laps and try and cajole them into changing his diaper. Their reality is far different than mine. Jumby is just another family member, one they accept as their own but one they don't really understand.
It doesn't occur to my family members that every day I shoulder the weight of what it really means to parent a child with such extreme disabilities. They understand he has to be tube fed, and chauffeured around in a wheelchair and diapered. They know he can't speak, or walk or dress himself.
But the nuances of his life and what it means to live with a plethora of disabilities doesn't affect them. They don't have to worry about the endless medical appointments, they don't struggle daily to keep him limber, and they don't worry about breaking his bones every time he needs to be dressed. They don't feel the weight of a thousand boulders resting on their chests thinking about his medical stability and worrying that this moment may be his last.
Nor should they have to. Boo and I adopted Jumby, no one else. They shouldn't worry about whether Jumby has a thousand tomorrows or just one. They don't have to lose sleep about the quality of Jumby's daily life, or worry about what his future holds. That's what Boo and I signed up for. It's our problem to solve about Jumby's long-term life goals. To agonize over whether he should be institutionalized or not in the future. The only real responsibility Jumby's extended family has is to ensure his safety in their presence, to love him and to make him know he is loved.
So when they drop the R word, they don't know they just shot a hundred arrows of hurt into my heart.
The R word continues to slip out. And I continue to stand up, both in real life and in the online world to say that is not okay. That is my son you are talking about. That little retard you just made a joke about, that could be my child.
It still affects Fric and Frac. It breaks their heart and chaps their arses when it is a school friend who pollutes their ears with this word.
We are all standing on the shores of ignorance and discrimination, fighting for the world to see the boy we love and to cease the unending use of such a hurtful world.
It's tiring. It breaks my heart. And I stand before you to shamefully admit that more than once I've heard that word used by someone I know, or like or even love, in real life and in the cyber world and have done nothing. Said nothing. I remained silent; because it was easier, because I'm tired of pointing out that every time you unthinkingly use that word you are minimizing the struggles of disabled people and their families. You are demeaning, mocking and disrespecting a society of people who have been forced to endure more hardship and struggles than most, simply by nature of their birth.
It's exhausting. And being the primary, often single caretaker of two teens and a fragile, overgrown, forever infant already exhausts me..
But that doesn't mean this isn't a battle that isn't worth fighting, just because I'm often too overwhelmed to pick up the armor, to busy plucking out the arrows of your hurt from my heart. My children deserve to live in a world free from this contagious ignorance.
So today, I'm once more standing up before you, asking everyone to think before they speak. And I'm thanking people like Ellen Seidman who has stood beside me, for her own family, her own child and wrote a powerful post on what happens if you ask people to stop using the R word.
It's not easy standing up for what you believe in when the cacophony of the world threatens to drown out your voice. When the internet says you have no dog in this fight simply because of the title of your blog. When strangers blatantly mock you and your family and when the world wants to simply stick their fingers in their ears and pretend they can't hear you.
I may not change your mind; you may still use the R word. But I will continue picking up my shield to fight this battle. Even when it seems exhausting and futile to do so.
Jumby deserves it. And so do you, even if you don't know it.
Fric is getting ready for battle. I'm right beside her.
Where I belong.