This morning, as is my habit, I sat down to read the comments left on Rolling Around in My Head overnight. I enjoy the discussion that happens in the comment section and read every single comment that comes in, some I read several times over. One that came in last night struck me. It was from Mary. She said:
My comment was going to start "wow, I'm so lucky that my friends are..."
And
then I wondered where that sentence was going to go. I'm so lucky that
my friends are... friendly to me? That my friends are nice to me? That
my friends are considerate of my needs?
I'm so lucky that my friends are prepared to behave like friends. Hmmm.
I understand exactly what Mary is saying here. When you have a disability, any kindness that you receive is often attributed, by others first and eventually yourself, to luck. It couldn't be that we, as disabled people are deserving of kindness or the rightful recipients of love.
I have been told that I'm so lucky that Joe stayed with me after my disability.
A woman I know, a wheelchair user who requires a fair bit of personal assistance, is constantly barraged with people saying that her husband is a 'saint' for not leaving her, for still loving her. She told me once, in a private moment, that she began to feel that the weight of other's perception of her as his burden began to crush her. She began to distrust her husband's love, began to see it as coming from a sense of duty, not a sense of affection. It was only after she admitted these feelings to him that she was able to hear, from him, from his heart, that he loved her. She says she does not feel lucky, she feels loved.
For parents of kids with disabilities there are thousands of subtle ways that tell you that your child is sent to you because you are saintly - heaven's special child chosen for you - and the message is, yours is a kid that no one would want but that you got stuck with so pull out the saintliness and get to work. When you express that you love your child, as is, the sentiment is often, 'Your child is lucky to have a parent like you.' A child is lucky, LUCKY, to have a parent that loves them? Yeah, luck.
I am worthy of love.
I am worthy of respect.
I am worthy of affection.
I am worthy of consideration.
Those sentiments, I think, are hard for most of us to actually get to. But for people with disabilities they are a radical statement of personhood and value.
I am not lucky.
I am worthy.
So there.
Heck, everyone in your life is lucky to have you in their life. I'm lucky to have found your blog. You've made me into a more worthy person.
ReplyDeleteIt is sad - sometimes one partner's disability shows faultlines in a relationship that were already there, but were being papered over.
ReplyDeleteI say good riddance, but it is still sad, because of that 'for better or for worse' which most people don't REALLY think about when they promise it.
The promise a parent makes to a child is similar - but it is hard when that commitment turns out to have a much longer lifespan than the ones having the child were thinking of. I wish people would think longer before they have children, but then we probably would become extinct as a species!
There is hope: a person who abandons a sick spouse is seen as selfish.
Alicia
This idea that I am special because I love and care for my child is one of things that makes me angriest. I love my child (yes he is an adult now, but all of my children are adults and they are still my children). I am pretty special I agree - not because I love and care for my child, but because of all the other wonderful character traits I possess :). Like you are special. Like Joe is special. But loving and caring for my child just makes me a parent.
ReplyDeleteI remember hearing you speak about this idea when my children were young and I was just starting out working in this field. You said something along the lines of "if people can think of those who live and work with individuals with disabilities as special, it lets them off the hook - since only special people could possibly do that". The conclusion is that no one would actually choose to love individuals with disabilities. I'm paraphrasing and filtering through my own experience of course but telling me I am special is also telling me that my child is less than.
And now, both you and Mary have inspired me with a comeback line to those who might say to me: "You're so lucky that ..."
ReplyDeleteTo wit: "You poor thing -- so unlucky that the people in your life are the sort who would abandon you... Have you thought about seeking a support group?"
I am my parents child. I am my friends friend. I am. Therefore I am loved and valued. So are you!
ReplyDeleteJulia
Or how Joshua voices it in own of his songs: "keep your faith, keep your beautiful smile; you are love, you are loved, pass it on, pass it on..."
ReplyDeleteYes, everyone deserves love and respect and opportunities.
ReplyDeleteThe reality is that many do not get it and some cannot give it. Sometimes there seems no rhyme nor reason as to why it happens so we mere mortals often call it "luck".
I'll say you're worthy... Oh my gosh, you are so worthy.
ReplyDeleteWell said. We are all worthy of respect.
ReplyDeleteI loved this blog post a while ago (http://www.whatdoyoudodear.com/the-myth-of-special-needs-supermom/ ), about taking "special needs moms" off the pedestal. And I love that it was written by a mom of a disabled child. I feel STRONGLY about how insulting and demeaning it is when my friends and family are complimented for being my friends and family. But if I speak up about it, I'm afraid it sounds ungrateful. It seems appropriate and more powerful for the friend/family member to say, "I'm not doing him/her any favors. We love/take care of each other."
ReplyDeleteI think it's totally normal to express appreciation and feelings of good fortune for the people in your own life. But it's NOT normal to express it on behalf of someone else. Telling somebody "you're lucky to have _____," strongly suggests that you don't deserve ____.