Dear Dad,
Dear Mommy, and Daddy
Mama, and Papa
Dear all the parents, of all the kids like me,
I know. You're jealous of those other parents. You're scared, and confused, and possibly even a little angry, because your child isn't typical, because life threw you for a loop, and now you're hearing confusing words like "autism", "cerebral palsy", "developmental delay", "Down Syndrome". You watch the way other parents go about their lives with such ease and you think "Why can't it be that easy for me?"
But do you realize what you do to me, when you say you're jealous? When you reference those other children, whose muscles developed in the "right" way, and in the "right" order? Does that make my body wrong? And if it does, doesn't that make me wrong?
When you say you're lucky, what does that make all the parents of all the children who are, in your eyes, "worse off"? Unlucky? Some would call you the unlucky one, for having me at all. If I were a "normal" child, would you consider yourself lucky, for avoiding the unfortunate reality of a disabled child?
You reference the drained bank accounts, the hours of therapy, as though I'm no more than another written check, a finance-sucking monster. Have you really distilled my life into a monetary value? Into a quantifiable number of hours, number of days? You dehumanize me.
You bemoan that I have never heard you say I love you. But I know you love me, because I can feel it. Love isn't about words. It's about the little things. It's about staying up all night, waiting to hear the slam of the door as your child comes in. It's about tucking your child in every night, even when you know she's way too old. It's about the hugs that mean everything. And it's about giving your child the best possible quality of life you can give - and knowing that quality of life doesn't mean being normal. It means being happy.
You make me feel like a burden on your life as you enumerate my difficulties, the things that other children do that I did late or may never do. Is that what you wanted? Because congratulations, you've succeeded. But you wanted to be my parent. It doesn't matter if you wanted a normal child more, because you can't request that of the egg and sperm that come together to make a child. You can't return me like a too-big dress, a shirt that looked good on the hanger, but awful when you brought me home. I am your child - like it or not.
I'd be lying if I said I wasn't jealous sometimes, too. Jealous of the fluid movements, of the endless energy, of the life without pain. But the fact of the matter is, this is my life and I enjoy it to the fullest. I do not feel the loss that you feel, because I never envisioned myself any other way. I am not broken, or worthless, or unlucky, or wrong. Please don't put those labels on me because of your unexpected journey into disability-land. I am whole, just the way I am. Do you see me that way?
You are entitled to your jealousy, and I am entitled to my sadness. All I want is for you to love me - no restrictions, no qualifiers, just the way I exist, right at this very moment. Is that too much to ask?
Love,
Your Child
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28 comments :
The emphasis that you are *whole* is particularly valuable. We AREN'T missing anything that is in fact intrinsic to us as people. One of the things I see said a lot, often in regard to people who are non-verbal, non-speaking, or labeled "low-functioning" is the implicit or explicit suggestion that it's a false hope that there is a "whole person" or "whole mind" behind the inability to communicate.
But of course there is. Whether that person will ever speak or type or communicate in any other form or not. Just because somebody has a mind that can't do everything that most people can, doesn't make it not whole. That person IS whole unto themselves. They just can't do everything that everyone else takes for granted.
Who can? What's the standard for who gets to judge anyone else whole or not whole? Who gets to impose that line?
You are not broken or unlucky or unworthy or wrong. You belong - we belong to each other - and I am so glad I know you.
The nerve of that mother for daring to have FEELINGS. And to actually write and share and speak those feelings! But it's good to know that her feelings give you purpose, a meaning in life. Someone to tear down. Good for you. You can lay your head down feeling proud that you've judged and maligned a mother for her feelings.
I think this is very interesting. Considering your comments left on a facebook page. Just as you are entitled your opinion, I am of mine. I think its ridiculous that you would attack someone like for having a difference of opinion. So what? The person you are writing about didn't blast you in this manner. She defended her post.
How are we going to get acceptance for people that have Autism when all you guys ever do is blast each other. Not everyone is going to agree with each. Its called agree to disagree not sit here and waste time writing a post that obviously does nothing but be hurtful. You need to grow up. Stop seeing the world through a close mind. Realize that not everyone agrees.That doesn't mean you have a hissy fit and blast people. If you want anyone to take you seriously than post something that worthy to read.
So it is OK for you to be jealous but not your mother, or other mothers? That seems a bit one sided, don't you think? I'm sorry to say but you sound like you are in your mid-twenties, without any children and therefor have very little basis to determine where a mother is actually coming from. Everyone is entitled to their feelings, including moms.
"I am broken, or worthless, or unlucky, or wrong." Not to be a nitpicker, but I think you are missing a "not" in this sentence. Wonderful piece, by the way. Thank you for writing this!
To be clear, I never said that it's not OK for her to be jealous - I specifically said she is entitled to her jealousy. I simply want her to take a closer look at how she makes children and adults with disabilities feel when she says those things, not to mention online, in public, where anyone can see and hear them.
Imma Navyspouse -
I'm not sure I understand. What comments on a Facebook page?
Sometimes they are things on the internet we don't like or agree with, and then we can just move on. Why write an entire post telling someone they're wrong for their feelings? She is free to put them out in public, you don't have to read them. If you want to disagree, do it without linking her and putting her name down, like you're berating a child.
I never put her name down and only linked to the video so that readers had background knowledge as to what I was responding to.
Thank you for having the courage to write this post knowing that some people would probably rush to criticize both it and you. I think it's important, for those who can listen anyway, that people understand something. Negative feelings are normal, natural and understandable. But negative feelings directed towards others, when posted on the internet, have consequences. With the freedoms we are given to express ourselves we also have responsibilities with respect to the words we publish. Thank you for sharing your thoughts on this.
One day, I sincery hope the so-called disability community will tire of the circular firing squad, deployed in the cause of philosophical purity and zero tolerance for diversity of opinion or perspective. Then perhaps we might see some real societal change.
The old saying is wrong when applied to disability rights. The whole world ISN'T watching. And why should it? We do such a good job of keeping each other down without the need for much in the way of assistance.
She is jealous, as she should, of parents who accept their children the way they are instead of blaming them for the "suffering" they cause her.
She wants pity, she fakes-cry and she smiles with satisfaction when the applause comes.
I was so much like what she says her children are, still am in a way.
My mother never engaged in self-pity. She went out and fought like hell to make more people see me the way she did.
She is jealous, as she should, of parents who accept their children the way they are instead of blaming them for the "suffering" they cause her.
She wants pity, she fakes-cry and she smiles with satisfaction when the applause comes.
I was so much like what she says her children are, still am in a way.
My mother never engaged in self-pity. She went out and fought like hell to make more people see me the way she did.
She is jealous, as she should, of parents who accept their children the way they are instead of blaming them for the "suffering" they cause her.
She wants pity, she fakes-cry and she smiles with satisfaction when the applause comes. I am not impressed.i am saddened that she talks about her children as if they are the reason for her dissatisfaction.
I was so much like what she says her children are, still am in a way.
My mother never engaged in self-pity. She went out and fought like hell to make more people see me the way she did.
I saw a nervous smile... not a "smile from satisfaction." As this woman's friend, I've been there as her daughter stop breathing and her son is having difficulties.
To be "jealous" of other parents' experiences is not wrong. It is really no different than wanting your neighbor's car... or a maid. And I know that this is going to be picked apart and lambasted. I get it.
Pick and choose to attack what you want. However, this woman isn't hating her children or her experience with them. She isn't hating other parents. She is NOT stating that her children are "broken" at ALL. To twist her words is an act of cruelty.
Come down off of your own emotional high horse. Do YOU have children? She wasn't calling her children "unlucky" or "unworthy." You have all twisted her words and made them ugly. Shame on you.
God forbid a parent express any type of emotion that they are feeling. God forbid we should have any emotions at all. That video was an example of the very thing that most special needs parents feel. She just had the courage to say it. Here's the thing, unless you live that person's life, why are you even criticizing her? Because you have never in your life felt jealousy over anything.
If you knew me, read my blog you'd see how wrong you are. But you won't because you're looking for something to be mad at, someone to blame. I'm sorry you took offense to my being honest about my situation. I said what I feel from time to time. You know nothing else of who I am or my relationships with my kids. You don't know about the advocacy work I've done- not from trolling the Internet writing horrible posts about people I don't know- but by knocking down the doors of congress- both on the state and national level. And more. But it doesn't matter to you because I dare say that I have human emotions - emotions that I said I hated myself for- that don't paint disability as the cakewalk it's not.
Surprise.
Only the real people are allowed feelings. Freeze Peach or something, too.
THe disability community & the disabled community will continue to be divided so long as the former spends such a large proportion of its time bemoaning the existence of the latter.
Yeah, Sorry my bad.. too many judgmental people on the interwebs today. Must be a full moon. I got you confused with someone else who got on the who is riding their high horse today.
So...naturally, everyone has a right to their feelings, and to seek compassion and support.
But...when it has been said, by disabled people, over and over and over, what made us feel guilty for existing as children...and a big, BIG one was feeling like a burden and a drain to our families...or knowing that our parents just wanted normal children and we didn't measure up, that we couldn't give them what they really wanted in a child....
Could there not be some kind of care taken by parents of disabled kids about HOW and in what venues those feelings are expressed?
Like, I have quite a lot of things that I feel and that I write that will never, ever leave my private notebook, let alone ever see the light of the internet. Because I know that, whether it should be that way or not, they have the power to wound or to give a seriously wrong representation of my intent.
You have the freedom and the right, of course, to put whatever you feel like on the internet. Once there, however, it has effects on other people, and criticism of those *effects* is not the same as attacking a person.
And Rob, perhaps the "circular firing squad" metaphor is, shall we say, not judicious. Given the number of disabled people who are actually, in fact, killed by their families and/or blamed for their own abuse.
Sure, everyone has an opinion and can legally express it to the internet to their heart's content, but a more relevant inquiry is, should they, based on the effect it will have (something that Autistics get drilled into them fast but that a good number of neurotypical people seem to forget when talking about Autistic people)? We as disabled people aren't doing this for fun or as part of some quest for ideological purity for its own sake. We're questioning these views and have to continue to question them because it affects people, and we know this having been there ourselves. Me? I remember being 11 years old and asking my mom, point blank, if she liked me as a person, as separate from loving me as her daughter, and being too overwhelmed to reach my feelings when she answered with, "You're very difficult." I can't think of how it's loving to want or even be able to tolerate the idea that your child would know or believe that they weren't what's wanted, and they will never, ever meet that standard because of what they are. Furthermore, I can't imagine how it wouldn't be worthwhile to challenge attitudes that value an idea of normalcy, and dead hopes for people who don't exist and won't ever, over actual, living people who don't fit within those bounds but need love and support now nonetheless.
You are very noble for hoping others will put their self centered ideologies away for the sake of their beautiful children.
Sadly, I see that some people only have children in order to impress others. In a beautiful world it is ugly to see what so many have become. A society of people that must compare, contrast and elevate only the 'chosen' few. We are all magnificent no time for jealousies.....
Good post Cara. My family never made me feel like a burden. The CP is a pain in the butt and my family is allowed to b*tch about it like I do. My hospital bills after surgery were also a yikes amount of $$ which anyone would be ticked about. I don't see parents as making their kids feel like burdens however what I do see is that when they get pregnant with a disabled kid or first get a diagnosis they get really scared and think "what the heck do I do with a disabled kid,how is it going to make me look" etc and that's awful but it is more of a fear of the unknown. I'd probably be a bit scared if I had a disabled kid since I would not know how to take care of one but I'd be more than happy to raise it.
In response to some of the other posts. I'v seen some crazy stuff in the disability rights movement where the disabled think the the abled bodied are out to get them and the disabled are better than them so they "owe" us and that's a load of crap. Most able bodied are simply misguided but mean well and we shouldn't think they automatically want the worst for us. I'm also sick of some people in the disability rights movement who criticize disabled people who seek treatments for their disability. Just because you wouldn't choose a treatment for yourself doesn't mean someone else who wants the treatment should not have access to it. That is a personal decision and people are even allowed to hate their disability if they want. Sorry for the rant my friend.
Margot
A long time ago my mom told me that just because someone can't talk or walk or do something the way that another person can it doesn't mean that they can't FEEL or don't have any emotions. There was this one time when I was younger where we both were in a store and we came across a boy who was in a wheelchair who couldn't speak or walk. My mom smiled at him and he smiled back. In that moment my mom and this boy made this incredible connection. This was a lesson that would stay with me for the rest of my life. I think that parents who make videos like the one that we saw don't take into consideration that their own children have feelings too. They are only thinking of themselves and their own feelings.
A long time ago my mom told me that just because someone can't talk or walk or do something the way that another person can it doesn't mean that they can't FEEL or don't have any emotions. There was this one time when I was younger where we both were in a store and we came across a boy who was in a wheelchair who couldn't speak or walk. My mom smiled at him and he smiled back. In that moment my mom and this boy made this incredible connection. This was a lesson that would stay with me for the rest of my life. I think that parents who make videos like the one that we saw don't take into consideration that their own children have feelings too. They are only thinking of themselves and their own feelings.
I'm a little put off.. as a mother to an autistic son.... that if I say my bank account is drained (which it is) or that I wish we could go out to dinner like other families (which we can't) or if I wish my son could have it a little easier (which I wish with all my heart) I'm somehow an awful, jealous, selfish mother! I am in no way unlucky or burdened to be his mother or do I think he is broken. I do however have a RIGHT to my own feelings when it comes to seeing other families that are able to do things I wish we could. Perhaps you have felt this way from your own family and for that I'm sorry.
I have not seen the video. But something that we all need to remember - we parents of special needs children - is that the internet is NOT private, and the words we put into it DO NOT GO AWAY. There is a chance that OUR children will someday see OUR words, see the videos we post of them at their most vulnerable. The question is, will they be helped by our words/deeds - or hurt by them?
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